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Beyond the mirror
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| To: | Kelley | From: Becky |
| just a note to let you know that we are praying for you and will be praying for you when you go in for surgery on .Friday.
I don't know you but my friend Gloria Salazar sent out an email to pray for you.
I love your smile and you keep smiling don't let the devil take that joy from you.
Be Blessed 6/1/08 | ||
| To: | Kelley | From: Kevin |
| Aoife Mallon froom Ireland that people have been talking about has been on this website annd posted some things at the bottem just to let yoou all know. 5/27/08 | ||
| To: | Kelley | From: Jessica |
| Hi Kelley, I can totally relate to your story. I too have lived with PRS since the age of three (3). I have become a very strong and independent individual but like every one else that's had to suffer the terrible disfiguring effects of this disease, there are certain insecurities I have trouble overcoming even though I am a very confident and intelligent woman. However, I have not let those insecurities overshadow the blessings God has gifted to me. Keep your head high and know that we are unique and special in our own way because God made us that way. God Bless!! 5/10/08 | ||
| To: | Kelley | From: Emilio and Diamen |
| You are Beautiful and Strong. Hang in there. My son to has Parry-Romberg and has had since he was 3. He is now 12 and has had 9 surgeries to help out a little. I always tell him to hold his head high and be proud of everything. So you hold your head high and continue to be strong. 4/9/08 | ||
| To: | Kelley | From: jm |
| how do you know this? 3/23/08 | ||
| To: | Kelley | From: Anonymous |
| She passed away on May 27, 2004. 3/22/08 | ||
| To: | Kelley | From: Jo Ann |
| Could someone tell me what happened to Aoife Mallon? I just watched the program about her and so admired her bravery and optimism. 3/19/08 | ||
| To: | Kelley | From: ashish |
| hi kelley i think u r a true inspiration to the people suffring from this syndrome. we dont know wat god has witten in the fate of the peoples suffring from this disease but i definately know that ur fight with this disease and positive atude toward life will give fighting sprit and a new dimension to the patient with this disease.
i have my dear one suffring with disease and he is too young to elaborate his pain and discomfort to us i am in india and want to get his treatment done at any cost even if i could sell my self to get him cured i need ur orginisations support i know u can help me further i ll wait for ur mail and response thanks. 12/6/07 | ||
| To: | Kelley | From: doreen |
| I have had this for 35 years I am married with three beautiful sons so please ignore the stares and look forward to a long life. If you like I'll send you a picture after many hours of surgery done 30 years ago, I look quite good and still work with children who do not even look at my face, My main problem was my teeth, Please contact me at any time you need to talk about it We are very rare people 10/19/07 | ||
| To: | Kelley | From: DENISE |
| KELLY, I READ ABOUT YOUR STORY TODAY--I AM RAISING MY 10 YEAR OLD GRANDDAUGHTER AND HOPE SHE WILL HAVE THE STRENGTH TO ENDURE LIFE AS WELL AS IT SEEMS YOU HAVE. YOUR MOTHER MUST BE VERY PROUD OF THE WAY YOU HAVE GROWN UP. I HOPE YOUR FUTURE WILL BE BRIGHTER AND GOD WILL HOLD YOUR HAND ALONG THE WAY. I HEARD A RADIO BROADCAST JUST THIS MORNING FROM A LADY IN A WHEELCHAIR(AFTER AN ACCIDENT)
SHARING THE THOUGHT THAT GOD HAS A PURPOSE FOR WHATEVER OUR LIVES BRING US. MAYBE YOURS WAS TO SHOW OTHERS THAT WE COULD ALL SURVIVE JUST ABOUT ANYTHING IF WE HAVE GOD ON OUR SIDE AND PERSIST WITH A FORUDE.
MAY YOUR DAYS BE FILLED WITH LAUGHTER AND LOVE. MAY YOU STAY STRONG NOT ONLY FOR YOURSELF, BUT FOR THOSE AROUND YOU. I KNOW GOD HAS GREAT THINGS PLANNED FOR YOU. 7/19/07 | ||
| To: | Kelley | From: Brittany Dees (CO) |
| ur amazing kelley! i dont think i have ever seen u without a smile on ur face! i know i dont really know u but from what i hear and read u are amazing! good luck and god bless! 5/1/07 | ||
| To: | Kelley | From: Cheryl in Delaware |
| You're going to have surgery in May or June? Believe me, you will be like Miss America when it's all over. I've seen your pictures; you sure are pretty as a picture. Just remember when you were bullied; those people weren't worth having as friends. I've been a bullying victim myself because I wanted to hang with a girl next door to me who was quite a bit younger and not my cronies from school. The girl had a younger brother who was mentally challenged; some awful rumor went around one of the schools I attended that my boyfriend was only 3 years old at the time; I was 15. I know that those people were not worth having as friends. I played with my pet cat a lot to ease the pain; moved to another state, but returned to this one, have all new friends now, and feeling much better about myself. My former classmates, by the way, a lot of them are now dead. Those who are alive, a lot of them don't even remember me, thank God. 4/30/07 | ||
| To: | Kelley | From: Jessy Girl |
| hello darling, i love you tons, i am soo excited for you and this upcoming spring. Everything will work out, no matter what happens surgery is a big deal but your a such a strong person i know you will make it through no problem! All my love! 4/2/07 | ||
| To: | Kelley | From: Shelby |
| Wow. Man am I inspired: but i am doing an article on you its kindove based on the article by Adelle Vancil Tilton, it was written in 2001 though. U ROCK! 12/4/06 | ||
| To: | Kelley | From: Renea |
| Kelley,
I heard your mom on the radio a couple of weeks ago and have often thought about you. I still remember a friendly little girl who lived just up the street. You would come over our house to play with Jordan and Sheridan. You have become a beautiful young lady. Glad to hear you are doing well in Windsor!
Renea Sutton (Westminster Neighbors) 11/9/06 | ||
| To: | Kelley | From: Ivan |
| Hi, nice 10/27/06 | ||
| To: | Kelley | From: Ivan |
| Hi, nice 10/27/06 | ||
| To: | Kelley | From: donna lynn |
| kelly , i keep getting cut off when i write this message so i hope you get it . i am 45 year old and have parry romberg syns on the right side of my face. i just want to let you know that we have to be patient accepting other people who have trouble accetping us . 10/12/06 | ||
| To: | Kelley | From: Frenchfriek@yahoo.com |
| Hey, Kelley!
I have to admit...Now that a person at my school has been diagnosed with prs...You're getting pretty well-known out here! even in New York! God bless you all! 10/8/06 | ||
| To: | Kelley | From: Jimena Arellano |
| hey kelley, you really are a beautiful girl...My sister, Gisela was recently diagnosed with P.r.s. and she says that it's awesome to know that there ARE people like her out here. Best of wishes, and love from Ohio.
-Jimena 10/8/06 | ||
| To: | Kelley | From: Heather Bohlinger |
| Hi Kelley, Donna and Jay,
I wanted to say hello after meeting you at the football game on Friday night. Wow, what an amazing journey you have had. I am so completely impressed with you all. Your courage, your positive atude, your determination to find a cure are truly remarkable. You have chosen to be VICTORIOUS instead of the victim. I feel blessed to have met you.
Love,
Heather Bohlinger 10/1/06 | ||
| To: | Kelley | From: Mary Rienzo |
| Kelley,
I just read the article in Readers Digest about you from July 2005. I just wanted to let you know that you are a very beautiful young lady. 5/12/06 | ||
| To: | Kelley | From: Verity |
| Kelley - I was born on August 1, 1991, too and it struck me how easily God ould have put me in your position. I was so inspired and humbled by your story. You have so much courage, Kelley, and I want you to remember to base that in God. In everything we go through, he should be the center. He put you were you are for a reason. He knew from before time began about you. Remember to trust Him, Kelley. I'm praying for you.
Love Verity
P.S. If you ever want to visit my website, it's servantofjesus.blogspot.com 5/5/06 | ||
| To: | Kelley | From: Lisa |
| Hi, Kelly, I just got through reading your story in Readers Digest. I cried at the end of the story not because of your disorder but because of the strenght and courage you have shown in the face of diversity. It sounds like your family is way beyond words in how wonderful they are. Keep on trekking kelly and stay brave. You are truly an inspiration to us all.....Lisa 3/23/06 | ||
| To: | Kelley | From: Geoffrey from Belgium |
| (sorry for my English)
Kelley, you are not allone i'm from Belgium and i have the same syndrom, and I hate it, Thursday i had plastic surgery they have put fet in my cheek en now it's much better, if you want mail me back and i will mail you some pictures of me.
and how are you doing for the moment???
greeting Geoffrey 3/4/06 | ||
| To: | Kelley | From: sarah sanchez |
| Hi
I have been reading your story and could not believe that there is no cure for this type of desease. I however feel that there is through natural supplementation. I would like to direct you to a nutritionist if you are interested in taking this journey. Please let me know. You are a very courageous girl and very beautiful....I admire you! 2/13/06 | ||
| To: | Kelley | From: Keli Roberts(makeup artist in Dallas tx |
| Hi Kelley,
How are you doing? I ran across this article and I couldn't believe how long it has been since I have seen you. I hope all is well for you. Do you remember me from Dr. Genecove's office. I sure remember you. You are beautiful and bright and precious. I hope you will email me back and catch up. I would love to know how everything is going. Tell your mom and dad Hello for me.
My cell phone is 469-774-9492
my email is keliroberts@hotmail.com
I look forward to talking with you soon. Take care.
Sincerely
Keli Roberts 2/10/06 | ||
| To: | Kelley | From: Keli Roberts(makeup artist in Dallas tx |
| Hi Kelley,
How are you doing? I ran across this article and I couldn't believe how long it has been since I have seen you. I hope all is well for you. Do you remember me from Dr. Genecove's office. I sure remember you. You are beautiful and bright and precious. I hope you will email me back and catch up. I would love to know how everything is going. Tell your mom and dad Hello for me.
My cell phone is 469-774-9492
my email is keliroberts@hotmail.com
I look forward to talking with you soon. Take care.
Sincerely
Keli Roberts 2/10/06 | ||
| To: | Kelley | From: Si |
| Kelley, you are an amazing girl and I send you my love and best wishes. You go girl!!! You are an inspiration to us all 1/31/06 | ||
| To: | Kelley | From: Philippine friend |
| Hi Kelly,
I read your story in the readers digest and i was touched. I may not have the same case that you have but i felt the sympathy, remember this that when one person said something bad to you, it's not your lost but their loss. People who backbite cant do anything just dont mind them because you are one step ahead of them. At least in your little way you make them happy at your expense and makes them nothing compared to you. They are narrow minded and dont stoop to thier level they are nothing...but a silly bunch of idiot and i think they just take their education literaly not by heart...so gal all i can say is that you are better than them... good luck to your new friend,and if you want i can be one of them...god bless you 1/30/06 | ||
| To: | Kelley | From: Apple |
| Dear kelley,hi!this is apple abrillo from the Philippines,i am 11 years old.i first read your story on
readers digest.and im very sorry to hear about how the disease made your classmates tease you and made you sad.but i saw that you moved to a new town and made a new friend!im very happy for you!try to email me back! your friend,apple 1/23/06 | ||
| To: | Kelley | From: Ember |
| Hi Kelley! You're such a brave girl! My whole class and I envy your bravery. Way to go girl! I'm sure you'll recover soon, God Bless! 1/14/06 | ||
| To: | Kelley | From: A mom in Washington |
| Hi Kelly-
When my daughter was in junior high, she would occasionally come home from school in tears if someone had been mean to her. Sensing that she had low confidence, I did everything in my power to make her understand that while in high school it could and would be difficult at times, but once she graduated she would find that the college-age students had a different set of values and would judge (and eventually accept her) if, and ONLY if, she was truly a good and kind person.
So rather than worrying about vanity and outward appearances, my sweetie concentrated on being a good and kind person to all, regardless of who they were and how they acted toward her. Proof came a few years later when some nice young man (ok - he was kinda dorky & probably too popular at school) came up to me and asked me if she was my daughter. I said yes, and he said he would never forget her because she was always so kind to him. That moment I was more proud of her than I've ever been in her life.
It sounds like you've already figured this secret out and manage to shine in spite of all the hurdles you've had to jump.
Dear girl - the cream always rises to the top. Hang in there and know that you will be looked up to by a lot of kids that are facing difficult times. Internet has a way of imortalizing a person - so you will be an example for others for many years to come.
In closing, as a mother, I'll just say you probably need to clean your room and give your cell phone a rest - just like any other kid.
Wishing you the best in life,
Sheila 1/8/06 | ||
| To: | Kelley | From: Mom |
| HI KELLBELL! I try to write to you here about once a year. You are amazing...and never stop! You're the manager of the boys' varsity basketball team, an elected member of FCCLA (Future Community, Career Leaders of America) and will be modeling with the CO AV'S to help raise money for The Children's Hospital! Wow! I'm so proud of all that you do! Keep reaching for the stars, hon! Love you, Mom 1/7/06 | ||
| To: | Kelley | From: Pam Hoffman |
| Kelley,
I think you are pretty amazing! I have a 13 yr old daughter with type I diabetes. We started her on glyconutients 2 years ago and they have changed her life and I thought they might help you as well because they give the body what it needs to heal itsself. It might be worth your family looking into. Go to www.glycoscience.org for more information or I can send you information if you want to e-mail me. God bless you! Pam 12/5/05 | ||
| To: | Kelley | From: Nicole |
| First of all, I will try to write message for you in english, just want to inform you that I come from Quebec city, and I just read Selection from reader's digest, and Kelley you impress me about your personality and let me to tell you that you are so beautiful when we see you with your lovely family. Never forget that the best thing is not the one that we can see. 12/1/05 | ||
| To: | Kelley | From: nizran |
| hi kelly... first of all i would like to give my respect to you , ur family and ur friends... i dont know what to say.. or how to tell u how i feel, it is never an honourable things for people to make fun of you... all that i learn since i was a kid is every type of religions teaches its followers to be nice.. everyone is equal n only their "inside" makes the difference.. i also believe that " never do to others what u dont want others do to you".. means any bad deeds a person have done, then; god will give it back to him.. before we do any thing bad to someone, we should first think "what if the same thing happens to my self?" or " to ur relatives?"
im wishing u all d best, keep on studying so it can indeed make you different!!!!
ALL THE BEST!!! JUST TO TELL YOU THAT YOU DO HAVE A FRIEND WORLWIDE ESPECIALLY IN MALAYSIA!!! salute!!! 11/28/05 | ||
| To: | Kelley | From: A WHS friend |
| OMG! I'm sorry that I never knew that much about you. I really love you and think you are the coolest person I ever met. This article I just read was so touching and I know that sounds really corny but it's true. The people that used to bully you are retarded because thay never got the chance to get to know you. I think you are the funniest person I ever met (except for me of course [JK]). Anyways this probably won't be the last message I send you. Bye for now. 11/12/05 | ||
| To: | Kelley | From: Jeff |
| I just want to let you know that I think you are a beautiful girl and person. It's amazing how people can be so ridiculous, but I guess that's part of life. Fortunately there are WINNERS like yourself who don't let those small minds get them down and they keep on going because they know what they are really worth. Take care and keep doing things just as you are and you will be rewarded. Your friend, Jeff 11/11/05 | ||
| To: | Kelley | From: Ruth K. RN |
| Hello, Kelley!
You are a wonderful young lady and I feel that you have a lot to teach others. I am very touched by your strength, courage and 'toughness'. Always remember that you have an opportunity to educate others about your disease process. Their teasing and rude remarks just show that they don't know and don't understand how complex and difficult your life is, now. They are to be pitied if the only way that they can feel good about themselves is to make fun of others. I'm a mother and a grandmother, as well as being a nurse. I'd be very happy to become one of your e-mail pals. (I went to school with a young lady who had the same disorder that you have and she played the flute in our orchestra...and very well, I might add!) 10/18/05 | ||
| To: | Kelley | From: Siobahn |
| Hello Kelley I was reading your story and I was heart broken. I have friend that I work with and she has the same disease as you, and when I went to high school with her I would make fun of her like something was wrong like I could catch it. It only took me one time to sit down and talk with her and i love her she is a wonderful person she has a boyfriend who is very supportive of her, so dont be ashamed everybody has something wrong with them if someone doest like you they are just dumb and most likely they dont like ther self. 10/13/05 | ||
| To: | Kelley | From: a girl who knows |
| some times i get mis judged because what i wear. i think it is real stupid. they call me prep, white girl,ect. i am mixed with white,german,irish,and blck. i get called white girl because i what i sometimes wear. what should i do?
a girl who knows 10/12/05 | ||
| To: | Kelley | From: Janet Erika |
| Hi my dear Kelley
I'm Janet.
I'm from Peru, and I'm studying English. I like to meet new friends. I like to chat with you. I saw your photos, and you are in beautiful places.
In the future, I will send you some photos about me.
Your friend.
Janet 10/9/05 | ||
| To: | Kelley | From: Heather |
| Kelley! I didnt know that all this had gone on in your life, I read the article and just broke down in tears. I am so sorry Kelley! I am here for you no matter what, and I love you lots. You can talk to me about ANYTHING no matter what. Even if you feel like the world hates u just know that i am here for you. Your an amazing girl inside and out.
love ya
Heather 10/2/05 | ||
| To: | Kelley | From: Annie Davis |
| Dear Kelley, I was touched by the story about you in Reader's Digest and wanted to let you know that I think that you are beautiful just the way you are. I told my second grade Sunday School class about you when one of them mentioned a bully at school, and they wanted me to find a way to tell you that "you're awesome and cool". Kristy and Kellie also say that you're "very very very pretty like a princess". They decided that if you don't let the bullies get to you, then they won't either, and that it's who they are on the inside that counts. Your story is an inspiration to everyone who hears it. Just wanted to let you know.
Annie Davis
Fightin' Texas Aggie Class of '09! 9/30/05 | ||
| To: | Kelley | From: Alison |
| Looking over this..it didn't leave my email.Here it is: lilamb28@wmconnect.com
Also anyone who sees this and sends me spam or otherwise,hey this is a library computer not my own.Think.
A.~ 9/27/05 | ||
| To: | Kelley | From: Alison |
| Hello Kelley,
First of all,I'm not sure how old this site is or if this gets to you at all but I'm willing to try.My name is Alison and I'm 29 yrs old.I'll be 30 next month,wow! Time flies! Anyway I also have an illness called artervenous malformation (AVM).It looks as if the left side of my face is paralized.It's kind of droopy and my left eye has damage.I cannot see well out of it like the other one.Also it stays kind of red,like allergies.Since my lower lid turned inward I had to have my eyelashes removed.Boy did that feel better! I have a crooked smile that makes me look like I'm giving people the evil look but I'm not.But the one thing on my face I'd truely like to be rid of is the giant vain that starts at my forehead and goes down the side of my nose and abruptly ends.Although it has gone down some,it's still there.I was able to hide it in school with my glasses...there is much to tell about my life,school,friends,God,maybe even similar to yours.I don't know how much room there is here so I'll leave my email from the library computer here.If you want you can type me using the email below.
Have a nice day/night.
A.~ 9/27/05 | ||
| To: | Kelley | From: J Moore |
| Kelley
I read your story in RD. I think its wonderful how brave you are. Its so sad people have made fun of you. I think you are awesome. Keep up good spirits. God bless you.
I work at a movie theater and restaurant in south carolina. 9/12/05 | ||
| To: | Kelley | From: Sarah |
| Hi kelley!!
I have had parry-romberg since I was 2. I know what it feels like to have people stare. However just keep in the back of your mind that God made you special for a reason. People stare because they are curious. You are a very beautiful girl. Keep your head high and always know that even though you may look different you a a person just like everybody else.
Sarah Forrest
Age 21 9/8/05 | ||
| To: | Kelley | From: wkares--ARK.-USA |
| Dearest Kelley, From the video & pictures I saw; you are a very pretty young lady. People of all ages & nationality's can be very cruel & hurtful.People tease everybody.They pick on the one's that it bothers. If you don't let it bother you, you will see a difference in your life & the abusers.You are a MIRACLE.Sometimes GOD puts a destintive mark on people or material things from a MIRACLE, to be proof of the MIRACLE.So be proud of the scars; they are special.You are a very special young lady.A heart of gold.Your scars are on the inside & outside.People's scars are mostly on the inside; where no-one notices unless they care to look. STAND TALL; you are a walking MIRACLE.GOD BLESS & LIGHT YOUR WAY ! I KARE.... 9/8/05 | ||
| To: | Kelley | From: Emily Behaeghe |
| Hi Kelley,
You probably don't remember me, but I went to school with your brother Dillon. But I remember having talked with you a couple times when he would have orchestra concerts and stuff like that. I just wanted to say that I am so sorry for everything that happened in Westminster, kids can be soo mean! I wish I would have known you were getting bullied because I would have put those little brats in their place! Anyway, I hope things are well for you, and that you are having fun in Windsor. Good luck with school and in all you do!
Love always,
Emily 9/6/05 | ||
| To: | Kelley | From: Robin Sikorski |
| I just read your story in reader's digest. My older sister has 3 kids, her 1st, a boy who's now 22 has water on the brain, the 2nd is fine and the 3rd has fredicks ataxia (spelling?) it's one of the 40 MDA's. I can relate about the bully's. My niece can't walk right anymore. BUT, she is now 15 and has a boy friend. I know by now you probably have enough friends, but if you would like a long distance friend I'm in Maryland (email buddy) I would love to have one, or I know my 13 year old daughter would! Although I will have to warn you about her she like to write long letters! I'm now 36 years old and have 3 girls of my own..13, 9, and 6. I'm VERY short only 4 feet 10 inches!, and growing up was really hard on me because the other kids thought it was ALWAYS fun to tease me and call me names! I stopped growing in the 7th grade. I've always tried to remain happy but sometimes, even now at this age, it still gets to me because there are some 7,8,9 year old kids that I have to look up to and because of that, they think they can disrespect me. People will see me get out of my mini-van and look funny at me because I'm so short and I drive something that big! I finally just started asking people in a nice way "is there a problem, can I help you?" If I'm havine a really bad day I feel awful later because I'll just ask them..What are you looking at?
Anyways, talk to your parents and if they want to talk to me or email me first, it's ok. I won't give you my phone # yet until I know they say it's ok, and I hear back from you. If I don't hear back from you then I'll know either they don't want you to contact me, or you have enough friends.
In any case, after reading your story and how happy you are in your new school, YOU GO GIRL!!!!! May God bless you and your family and your new best friend..Breanne. I know it must have been really hard for your brothers to move away from their friends, but now that your happier, they hopefully will be too! And if someone stares at you again politely tell them to take a picture, it will last them a lot longer, them ask them if they want you to smile for it or not..watch how quickly they stop looking at you and how fast they try to get away because they are so embarresed that you caught them!
Chin up, take care and I hope I do hear back from you!
Robin Sikorski
Maryland
ps. I don't know if my email address will show up on another part of this so I'm going to put it here 2 different ways so hopefully ya'll will get at yahoo (dot) com 8/11/05 | ||
| To: | Kelley | From: Peggy in Arizona |
| Hi Kelley,
I just read your story in the Readers Digest, and want to say Thank you for sharing it. You're a very beautiful young woman. You are a shining star for people to look up to. I feel sorry for people who don't see your beauty for what it is, purest radiance. You are an inspiration to humanity, and I feel richer for having read your story. Life holds many wonderful things for you honey. Never change who you are, and keep on shining! 8/9/05 | ||
| To: | Kelley | From: caroline |
| Hi Kelley! My name is Caroline and I am trying to find a doctor in New Jersey who is familiar with or hopefully an expert in Romberg's Syndrome. I have been looking all over the web with no luck. I came across this site with all the emails to you and must admit I have not read the article everyone is talking about, but I have read enough E-MAILS to know you are a very special and blessed person. I don't know if you are anywhere near New Jersey, but if you can help me, or know of someone who can, please respond. God bless and have a nice day! 8/1/05 | ||
| To: | Kelley | From: Dee |
| Dearest Kelley,
I just read your story and I wanted to let you know you are an inspiration. You are courageous and a real blessing to many, those who share your disease and those who don't.
True beauty comes from your heart and who your are, they are priceles.
You'll be in my prayers. 7/30/05 | ||
| To: | Kelley | From: Charline |
| Kelly,
You are very brave to open up to the world like you have. I can only hope that my five daughter's will have the courage you have to face the world as you have done. Please remember that like you have said,its what is on the inside, but you must know that you are very pretty on the outside as well.
Thank you
Charline 7/29/05 | ||
| To: | Kelley | From: Anne |
| Dear Kelley --
Thank you for sharing your inspiring story in Reader's Digest. I applaud you in your determine to be the best person you can. It's hard, yet important, to remember that your inner self is your true self, and that's the part that touches others most deeply. You sound like an amazing young woman, and I wish only the best for you as you continue your life journey. Stay strong and keep sharing all of you with the people you meet. They will be better having known you!! God bless. Anne 7/22/05 | ||
| To: | Kelley | From: Eileen A. |
| Hi: I read your story, and the comment that you "are like any other little girl, but you have a disease". Well, you are not, but I wish you were. I wish the other kids were more like you. Whenver someone rises above adversity as well as you have, it shows their strength of character. And I wish every kid, girl and boy, had your strength of character. Especially American kids! You are special, and this disease gave you the forum to show just how terrific your true character is. You are a winner, who has been given a very hard and tough break. I will pray for you and your complete recovery - all the way from New York City. People who don't try to understand your problems and who cannot appreciate what you go through are just shallow and ignorant. Your beauty shows in your face, as well as your intelligence and sensitivity. Your family sounds great and I hope the best for you all! 7/18/05 | ||
| To: | Kelley | From: Sarah |
| hi kelly my name is sarah and i live in Lakeland,Florida. i read your story on the net. i hope you are doing better with your life. i am very proud of how you put up with those bullies. i wish i could meet you in person because i would be glad to help with anything you are in need of. i love helping and writing to people with cases like this. if you could write back to me that would be great but i know you are busy and other people want u to write to them but i understand that so its no big deal. anyway i hope you take life easy from now because to me you are very normal. witch of course you are. nice e-mailing to you. well gotta go. catch you later. 7/17/05 | ||
| To: | Kelley | From: Lindsay Pilcher |
| Hi Kelley!!! i'm 14 and i just read your story in the readers digest and i was so proud of the way you put up with those bullies. i'm glad you found a friend who loves you for you and not your looks. i saw your picture and you looked beautiful to me! i have so much troublei with my hair and i saw your straight hair and was thkning, 'why cant my hair be like that??" God's gonna bless you and He has big plans for your life and He is going to use you in many ways. continue to be the strong person you are. God bless you!! 7/11/05 | ||
| To: | Kelley | From: Danielle |
| Hi Kelly! I'm 17 years old, and I live in Ontario, Canada. I just read your story in Reader's Digest this morning, and I can't even begin to describe how strong and brave I think you are. It's unbelievable how cruel people can be. You're such and amazing person, and no one deserves the friends you have more than you do. It's great how you overcame all of the terrible things kids said, and I mean this in the most sincere way, when I say you're a real inspiration to me. Good luck in whatever you do with your life. 7/10/05 | ||
| To: | Kelley | From: Debbie |
| Hello Kelley,
I just read the article about you in my Reader's Digest, called Face Value. I just wanted to let you know that I think you are a very brave young woman and I know that although you are uncomfortable with your looks, I feel sure it won't stop you from being and doing whatever you want.
You have learned at an early age how shallow some people can be. Stay strong and know that your family, friends and God love you.
Here is my favorite Bible Verse. It has helped me throught lots of tough times. I hope it does the same for you.
Trust in the Lord with ALL your heart. Do not lean on your own understanding,in all your ways acknowledge him, and he will make your paths straight.Proverbs 3:5-6
Love,
Your new friend,
Debbie 7/9/05 | ||
| To: | Kelley | From: Nicole |
| I too have read your story in Readers Digest. I have to say, it brought me to tears that people do not realize that their words and actions have a such a negative affect on people. Moving might have been hard on your brothers but I am sure they realize that being ridiculed and feeling as I am sure you must have was much harder. I must admit, from your pictures, I do not see why people would have ridiculed you but hopefully they will see, (without name in your story) who they are and be eternally regretful that their ignorance was so hurtful but on the upside for you, I think it made you strong and assured as you were able to share your story with all. 7/6/05 | ||
| To: | Kelley | From: robyn |
| Kelley I just read about you and your disease and was compelled to write. Be strong and may God Bless You in the days ahead. I will keep you in my prayers and the scientist to maybe find a cure. 6/29/05 | ||
| To: | Kelley | From: The Brawner Family In Fort Worth Texas |
| Dear Kelly, I first read about your story in the Reader's Digest. I think that you are one of the bravest girls that I have ever read about. God Bless you and Family and all of the friends that you have made. God has a place for you in this world, and he will see to it that you will be well taken care of. I am praying that you affliction will go into remission. When that happens, Doctors can do wonderful things nowadays. One other thing, We all think that you are a BEAUTIFUL girl inside and out. Please keep you head up and and keep on smiling you wonderful smile.
Mark, Karen and Brad Brawner 6/27/05 | ||
| To: | Kelley | From: Sheila Tapscott |
| Dear Kelley,
I read about your condition in the Readers Digest and I want to say that you are truely a wonderful person. I know how it is to be picked on constantly at school and everywhere you go. I was because I was fat. I'm like you in a way but with a different disorder. I switched schools after school after schools until I found one where people excepted me for who I am. And now I'm 19 and I'm still the same chubby girl I always have been but there's something different about me. I have my self esteem back, Im happy, and I have many friends now. I want to tell you to enjoy life while you can and dont let no one and I mean no one bring you down because if they have the time to say some rude comment about you then they wont amount to much in life. Keep your head up high and smile at the world. Show people that yes I have a disorder and Im not letting it keep me from doing what I want. Because I had to realize that and I did and now I feel so much better. I hope you have a wonderful life with many friends.Just keep aiming for your goals and you will reach them one day. Live for today not tomorrow because tomorrow may never come. May God Bless you now and forever. Sincerely, Sheila N Tapscott 6/27/05 | ||
| To: | Kelley | From: Holly |
| Kelley,
You are a beautiful , wonderful young lady, and I hope all of God's most special blessings on your life.
He has a purpose and a plan for your life! Jer 29:11. 6/27/05 | ||
| To: | Kelley | From: cheryl dee |
| I read your story in Readers Digest & I want to tell you how much I admire your Strength and your beauty. Beauty, remember starts in the heart. I know that your parents and brothers are very proud of you. It would also be nice to thank your brothers for the little things they do for you each day. 6/27/05 | ||
| To: | Kelley | From: Tammy From San Deigo |
| I was a student in Ruland J.R. high in the 80's I had Miss Susen Orton for a techer befor she moved to MI. I had you as a counselor back thin.Were going to be in town on the 21th of July and would love to see you if your in. Take care Tammy Kay Chalup/Nordwick 6/25/05 | ||
| To: | Kelley | From: Haley Hellrich |
| Hey Kelley,
I am 19 years old and i have just come across your article in the newspaper and I too suffer the same disease you do. I would really like it if we could email or if you have aim my screenname is jetskichick04. I would really love to talk to you.
Thanks,
Haley 6/22/05 | ||
| To: | Kelley | From: Gretchen |
| Just remember God doesn't care how you look and he had fun making each and every one of us look unique! The world would be so boring without variety. God thinks your beautiful and you're created in his own immage. What could be better than being created in the immage of God? Anyways hope your havin a Great summer! Wish you the best of luck.
~Gretchen (age 14) 6/21/05 | ||
| To: | Kelley | From: Matthew |
| Dear Kelley,
I read about your story in reader's digest. It was simply heart breaking to hear how others treated you. I myself grew up with Tourette's Syndrome and OCD. I was always the one teased or bullied. I have now enrolled in a Ph D program at age 24. I saw your pictures in reader's digest. I think you are going to grow up to be a beautiful young lady. Remember that you are created in God's image. God doesn't create worthless or ugly people. My dream is to be a scientist to research diseases to help others. I shall keep you and your family in my prayers. I am not sure that you know that Jesus loves you very much. He promises to pick you up in His arms and walk you through the difficult times. Don't pay attention to those who taunt or tease you, for they are "small people." It really takes quite a nobel person to look past physical qualities to see the beauty underneath. You might find further inspiration in doing some research on how Stephen Hawking has led a very famous life but with a debilitating condition. I am glad you have such supportive parents and family. There were times when I got tired of "being different." I would get tired of people "pretending to imitate Tourette's" and laughing at me. You'll find that a Church and Christian friends will help you through it all. You have a bright future a head of you. You are a beautiful person. I saw nothing in the pictures I would laugh at. I didn't see anything ugly at all.
Best regards and God bless,
Matthew 6/21/05 | ||
| To: | Kelley | From: JENNIFER IN NY |
| Kelley,
I cannot offer answers to the why of this disease. I am sorry that you have to suffer the cruelty of other people's ignorance and fear. I am a homeschooling mom of 5 and am trying to stress the importance of not jusding people by their looks. It is what is on the inside that is worth its weight in gold. Try to remmeber that. Some of the most beautiful people are actually some of the world's ugliest in their hearts. Feel free to email me if you need encouragement or support. Jennifer 6/20/05 | ||
| To: | Kelley | From: erin |
| kelley,
i just read your story in the july 2005 readers digest. you are a strong young girl. its stories like yours that help me inspire me to be positive about everything. i'm amazed by the determination you have every day. by staying strong and up beat, you will overcome this. don't be concerned about your looks. if people can't accept you the way you are, they simply are not worth your time or companionship. especially with boys. if and when you find one that enjoys being with you simply because of who you are inside, you know its worth it. stay sweet and keep in touch. 6/20/05 | ||
| To: | Kelley | From: Magghe |
| ALL women are beautiful....I believe God gave us all a great beauty....some of us have a beauty that others cannot see....perhaps it is they who have a problem.
This little phrase gets me thru many days....I am the mum of 2 disabled sons...they are great guys,but get picked on,and have even gotten death threats....I find it the most sad and isolated thing I have ever endured. BUT,My sons are awesome guys....their being handicapped doesn't change that....other people can't see that though....what they see is a "retard".
You hang in there luv....someday,all the beauty God intended to be seen,will be.Your beauty isn't in your face...it's in YOU! After reading your story here,I think you are awesome,brave and bound for great things.....the rest is just the gravy!
Best wishes to you in everything you do.....I'm sure you will do it 6/19/05 | ||
| To: | Kelley | From: an inspired girl |
| Kelley, don't let what anyone else says or does to hurt you. Just remember that you are beautiful no matter what anyone else says or does. After reading your article, i just had to get online and learn about it. I think that you're the most beautiful person for being couragous as that. I am inspired by your greatness and courage! Your a better person for that! 6/19/05 | ||
| To: | Kelley | From: stacy cain |
| i read your story recently and was very impressed at your courage and resiliance. People can be cruel and heartless because they are ignorant and insecure but you're a bigger and better person than anyone who's been mean to you. I just wanted to say thank you for being someone that people can look up to! 6/17/05 | ||
| To: | Kelley | From: Mary |
| Hi there, sweetness. Well, me too - I'm going to sound like a broken record (an old fashioned, vinyl CD!) of all your messages from the other lovely people, but I just read your story in Reader's Digest, and I just fell in love with you and your family. While I know that God doesn't want me to judge others, I have a hard time not being angry at those who have hurt you - I will NEVER cease to be amazed at people who torment people who are already clearly suffering, either emotionally or physically. But there are more of us out here who think you are beautiful, inside and out (those eyes, girl - the window to your amazing soul!) and I know you are going to have a happy, fulfilling life. God sure knew what He was doing when He assembled your family!
XO 6/17/05 | ||
| To: | Kelley | From: Crystal |
| Kelley, What a jerk I am... I'm sorry for mispelling your name...I just realized that when I submitted my "short novel" ;) In any case I wanted to apologize! Take care kid, I'll keep you and your family in my prayers!!!
Truly,
Crystal M. -El Paso, TX 6/16/05 | ||
| To: | Kelley | From: Crystal |
| Hello Kelly, I, too, just finished reading your story in the July 2005 issue of Reader's Digest. I really don't know what to say aside from the fact that I am glad to know that there are beautiful people like you out in the world. I assume you just finished your 8th grade year, and will now be entering high school, yes? I am very sure that your popularity will not diminish, but only increase. You seem to have a beautiful soul and you may have been told this before, but you have bee--oo--tiful eyes!!! Sorry, I can tend to be a bit of a geek sometimes...Anyways, I hope this very long "comment" (more like a short novel!) brings a smile to your face. It's the least I can do since you have already brought a smile to mine by sharing your story. Girlie, you are awesome, and I wish we could meet just so that I could bask in the positive energy I am sure you give off!! Take care my dear. Enjoy life to the fullest as I am sure you will! Truly, Crystal -El Paso, TX 6/16/05 | ||
| To: | Kelley | From: Shirley |
| Kelley, I just finished reading your story in Readers Digest. Be assured that you are a child of God and he is beside you every step of the way. He will never let you down.You are added to my prayer list and I will be praying for you every night. 6/15/05 | ||
| To: | Kelley | From: Toni |
| Kelley,
I just finished reading your story in the Reader's Digest and I am so blessed by your family and your atude. I believe God will use you mightily to touch the hearts of those around you. You are a wonderful young lady, and I pray the Lord gives you the desires of your heart. Keep your eyes on Jesus, Kelley. Thank you for sharing your story with the rest of us. We needed to hear it! 6/15/05 | ||
| To: | Kelley | From: Sweeny |
| Kelly, What a wonderful inspiration you are and a brave young woman. Take the world by the horns and keep going. Be aware that when most people get older they will look back and know what snobs they were. Bless your parents for their forude, and your brothers for their support. Kive long and well Kelly!! 6/15/05 | ||
| To: | Kelley | From: Jami |
| I am reading your story in readers digest. You are so brave to share your story. You're a great inspiration. I am sorry you have had to endure the hell that ignorant people have caused you emotionally and mentally. They are the sick ones. I would love to continue to hear about your progress. I think you are adorable. 6/14/05 | ||
| To: | Kelley | From: Justin Boyter |
| Hello, Kelley. I'm Justin,Im 17,And i live in texas.I read your story in "READER'S DIGEST",and felt that i had to give a good response.I thought it was wrong for so many people to make fun of what's wrong with you,and just always give you a hard time about it. well,i really dont have alot to say,but i want want you to know that my family will pray for you,and i hope that you will get to live a better life everyday! SomeOne who cares,Justin B. (of Arlington,TX)
P.S.- if wish to respond back,you can leave a message wish many blessings upon your life 6/14/05 | ||
| To: | Kelley | From: Someone who cares! |
| Hi Kelley,
I see that I'm just one of many people that have written to you. Only I'm going to make this really short because I just wrote a very long detailed letter and got bumped off. There wasn't a way to save it. I would like to talk to you in person or maybe your Mom or Dad on the phone. I'm not a Dr. but I've had alot of success with overcoming some personal illnesses and several friends and family members have had great results. It's too much to explain in an e-mail so if you are willing to call and talk to me I would love the chance to share some information with you or your parents. I'm not a quack-I have two sons that live close to you. One in Winsor and One in Loveland with his wife and our three grandchildren. I guess that isn't any reason to say that I'm not a quack but I truly would not be wasting my time and especially yours if I didn't feel there may be something else that could be done about your disease. My husband is a CFO for a major furniture Co. here in colo. and I just spend 90% of my time helping family and friends get well. I hope you give me a call. You are an adorable young lady.
Thanks for listening,
Sharon If I don't hear from you Kelley, I wish you many blessings in your life. 6/11/05 | ||
| To: | Kelley | From: Someone who cares! |
| Hi Kelley,
I see that I'm just one of many people that have written to you. Only I'm going to make this really short because I just wrote a very long detailed letter and got bumped off. There wasn't a way to save it. I would like to talk to you in person or maybe your Mom or Dad on the phone. I'm not a Dr. but I've had alot of success with overcoming some personal illnesses and several friends and family members have had great results. It's too much to explain in an e-mail so if you are willing to call and talk to me I would love the chance to share some information with you or your parents. I'm not a quack-I have two sons that live close to you. One in Winsor and One in Loveland with his wife and our three grandchildren. I guess that isn't any reason to say that I'm not a quack but I truly would not be wasting my time and especially yours if I didn't feel there may be something else that could be done about your disease. My husband is a CFO for a major furniture Co. here in colo. and I just spend 90% of my time helping family and friends get well. I hope you give me a call. You are an adorable young lady.
Thanks for listening,
Sharon If I don't hear from you Kelley, I wish you many blessings in your life. 6/11/05 | ||
| To: | Kelley | From: Someone who cares! |
| Hi Kelley,
I see that I'm just one of many people that have written to you. Only I'm going to make this really short because I just wrote a very long detailed letter and got bumped off. There wasn't a way to save it. I would like to talk to you in person or maybe your Mom or Dad on the phone. I'm not a Dr. but I've had alot of success with overcoming some personal illnesses and several friends and family members have had great results. It's too much to explain in an e-mail so if you are willing to call and talk to me I would love the chance to share some information with you or your parents. I'm not a quack-I have two sons that live close to you. One in Winsor and One in Loveland with his wife and our three grandchildren. I guess that isn't any reason to say that I'm not a quack but I truly would not be wasting my time and especially yours if I didn't feel there may be something else that could be done about your disease. My husband is a CFO for a major furniture Co. here in colo. and I just spend 90% of my time helping family and friends get well. I hope you give me a call. You are an adorable young lady.
Thanks for listening,
Sharon If I don't hear from you Kelley, I wish you many blessings in your life. 6/11/05 | ||
| To: | Kelley | From: Mickie Jones |
| Hey Kelley, I just read about you in Readers Digest.Your story really touched me,You are a terrific kid,and so lucky to have parents and friends who rally around you.I know it was hard with all the teasing,and am so happy that making a geographical change made alot of difference.I am 43 yrs old and a mother of 3 children and a beautiful grandson with one more on the way.I feel blessed with all I have and after today I am more blessed to have learned about you,keep your spirits up kid, you make me smile! 6/9/05 | ||
| To: | Kelley | From: Jeanne Sikkens |
| Hi Kelley Belle! Do you remember me?How are you doing? I have been corresponding with your mom (although, I haven't written lately) and catching up on your new life in Windsor. How is school going? Are you almost out for the summer? Any big plans?? Walker is almost out of school for the summer too...he is going to summer camp at his school for a couple of weeks and then summer camp at the elementary school in our village. He is now 4 1/2! When we moved from Denver to Corrales, NM he was only 1 1/2. Time has gone by so fast...I think of you all the time and wonder how you are doing? I was going through my wedding photos the other day and you were in them!! Such a cute flower girl!! I think you were 3 at the time...I hope things are going OK and you are looking forward to your summer! Love you!!
~Jeanne 5/16/05 | ||
| To: | Kelley | From: claire |
| hi kelley,
i wrote you all the way back on the 9/19/01.
I just stumbled upon this page and my name pops up. In 2002 i went for an operation and had a stroke, i had to learn how to walk again.
I am no longer 10, but 14, soon to be 15.
And yet i have no cure. I am still teased at school, and life is hard, but ya gotta hold on. bye 5/12/05 | ||
| To: | Kelley | From: terri |
| just remember beauty isn't everything and you are pretty in every way don't let life stop you from doing things that you wanted to dohotmail.co.uk 5/8/05 | ||
| To: | Kelley | From: Your cousin Jane in PA |
| Hi there Kelley,
How much snow did you get there last week. We are having a crazy Spring here too.
How do you like your new house and your new school?
Did I hear something about your family coming to the East this summer? I would love that, it has been a few years since we were together at Lake of the Ozarks. You could swim with us in our new pool and ride on our train too.
I hope that you have a great day today and please know that I pray for you and think of you often. Always remember that Jesus loves you and so do we.
Love ya, Cousin Jane :-) 4/21/05 | ||
| To: | Kelley | From: Karen Stewart |
| I accidentally came across this website while doing research for a school assignment. This is the first that I have heard of this disease but I believe nothing is by chance. God allows paths to cross for a reason. So, I believe that it is God's will for me to inspire and encourage you along this life's journey. Know that everyday that you are loved not only by your family but God sent you to your family as a gift. Your very presence is uplifting someone who is going through the same thing.
The bible says that God will not leave us or forsake us. When you are feeling low know that God has not forsaken you. Even the disease that you suffer with is a testimony to how life should be cherished not for the material things but because God uniquely made every individual for a purpose and a wonderful plan in this earth.
For God so loved the world (you) that He gave his only begotten son that whosoever would believe in Him shall not perish but have everlasting life.
Believe on Him and confess with your mouth your faith in him that God raised Christ from the dead then you shall be saved.. not only for your wonderful life but also for enternity.
Let God use you and your true beauty to help others understand that the value of life is not on the outside but what lies within.
May God Bless you..you will be in my prayers. 4/20/05 | ||
| To: | Kelley | From: Dianne Patrick |
| Hi Kelly,
You have been on my mind latley....
How are things going. You have had alot of publicity lately and I was wondering how you are doing.You are the most courgeous young lady I have ever meet.
If you do not remember who I am I work with your mom at Mary Blair. Kelly you have such a wonderful spirit and you are a very beautiful person. I just wanted you to know that I have thought of you often and I am awed by your courage!!!!
If you ever want to chat let me know.
you have my email... I do not know how to use IM....but do not tell anyone...
much love,
Dianne Patrick 4/8/05 | ||
| To: | Kelley | From: Mom |
| I can't believe that you are almost out of middle school! You've handled it so well! High School will be just as wonderful...even better! I'm so proud of you!
Love and Hugs,
Mom 4/8/05 | ||
| To: | Kelley | From: Lib McMiller |
| Hey Kelley as you already know my name I am 15 yrs. I am in high school I attend West Laurens High School old and today in 2md period I read and article about you. This is my first time every hearing about this kind of down syndrome, just to let you know you are a regular child and don't worry about what people may say about you just know that you are blessed and after I finished reading your article it really was an inspiration to me and made me think alot about life. Hopefully every thing well get better for you soon and just know you have people that really care about you and I will be praying for. When every you get the chance please write me back. Love lib 3/22/05 | ||
| To: | Kelley | From: wm |
| lasvegas,nevada wm trash containers are presently switching to natz to let the peoplw now no that the fun has just begun. oshua******?f1esc./kelly kizz is still the same short sound but there is a big nat like I told you once even200000000000000 twa12345678910. 2/28/05 | ||
| To: | Kelley | From: amanda |
| hi kelley,
i just wanted to say a quick hi. i was researching prs and discovered your name and i know what you are going through. aoife mallon was one of my best friends and i saw everyday what she went through, i can only hope that you wont let this affect you and be the same as her, a vibrant, beautiful and strong young woman. 2/24/05 | ||
| To: | Kelley | From: Seth White;'s mom |
| Hi Kelly,
I heard you made the trip to Dallas to see Dr Genecov. Seth will be starting Sculptura injections into his face in a couple of weeks. Did you have some injections? How did you feel afterwards? Seth keeps asking me what it will feel like and I can't tell him as I have never had anything done like that before. Anything would be appreciated. 1/25/05 | ||
| To: | Kelley | From: anne |
| hey kelley, i am nineteen, and was just diagnosed with parry romberg syndrome. no one seems to understand how hard it is to deal with something like this. even my family thinks it is "no big deal". i just wanted to let you know, your an inspiration to me and i pray for you daily. if you ever want to email me i'd be glad to write back 1/23/05 | ||
| To: | Kelley | From: richard lecaro |
| i have something that will improve the quality of your life.have your parent call me at 1 623 939 3337. 1/22/05 | ||
| To: | Kelley | From: Elly |
| My Dearest Kelly
You are a brave little girl. I am also suffering from this disorder. I am a 32 year old mother of two who has never been able to talk about it. All the best for furture & lots of love
Elly XXX 1/15/05 | ||
| To: | Kelley | From: roy |
| Is it true that Aoife Mallon has passed away? That saddens me very much. She seemed like such a great person. 1/3/05 | ||
| To: | Kelley | From: Evelyn Vollmer |
| Hi Kelley,
I just saw the story (again) about Aoife Mallon in Ireland who has Parry Romberg. I wanted more information about how she has been doing and was shocked to find her death notice. I can't seem to find any information about what happened. Do you know anything about what happened? It is so sad all she went through. Thank you. 12/29/04 | ||
| To: | Kelley | From: Carolyn |
| Kelley, when I read the story and saw your face, I could not believe the words matched the pictures. You are a beautiful girl.
Take care of yourself. 12/27/04 | ||
| To: | Kelley | From: Circe |
| Kelley,
No matter what anyone else percieves, you are a beautiful little girl on the inside and the outside. Things are tough for you right now, but you keep your chin up and show the world what a wonderful person you are. Don't ever give up! I know that there are a lot of people looking out for you, who care about you, and love you. You take care kiddo! 12/25/04 | ||
| To: | Kelley | From: megan in tennessee |
| kelley, hi i'm megan i'm 25 and i too have prs. the first thing i wanna say is that u are very brave sweetie. i've been through everything u have been through from the gruesom aganozing neverending mingranes to all the teasing. when u get older u realize that what u go through in life u always come out strong. ive never met or spoken or even chatted with anyone that has prs.i just got my first computer, and i feel so blessed that i have found u. i see myself in u, i just cried when i read your story. please write soon, im so anxious to hear from u. be strong, megan 12/11/04 | ||
| To: | Kelley | From: megan in tennessee |
| kelley, hi i'm megan i'm 25 and i too have prs. the first thing i wanna say is that u are very brave sweetie. i've been through everything u have been through from the gruesom aganozing neverending mingranes to all the teasing. when u get older u realize that what u go through in life u always come out strong. ive never met or spoken or even chatted with anyone that has prs.i just got my first computer, and i feel so blessed that i have found u. i see myself in u, i just cried when i read your story. please write soon, im so anxious to hear from u. be strong, megan 12/11/04 | ||
| To: | Kelley | From: loretta |
| Kelley-
Today, I watched a show on Discovery Health channel about a young girl that suffers from Parry too. She was getting facial reconstruction surgery to minimize the effects. When the show was over, I was so curious about this condition that I looked it up on the web and found your story. I can't imagine what you must go through with your headaches. I get migraines, but now that I am older (38 years old), they have stopped happening so often. I really don't know why I am writing except to say, "hang in there" and give you my support. You are a beautiful girl. I hope the interest that the Discovery Channel brings to Parry Romberg will spur pharmaceutical companies to more research and eventually a cure. Very much luck and hope to you, Kelley. 10/9/04 | ||
| To: | Kelley | From: Brianna Evans |
| Kelly,
I think you are so beautiful. There are worse things in the world that could happen to you. Don't let this disease keep you inside. I can't say that I know how you feel because I don't, but I know that you can rise above this disease and let others like yourself know that you still live like you want to. Never let anyone put you down. I believe in you and I know you can get past this. Anytime you need to talk about your day, I will always be available to you. Get your parents permission, and you can email me anytime you need me. 10/7/04 | ||
| To: | Kelley | From: Shawn |
| Let me start off by saying my prayers are with you. Last night, while trying to get to sleep, I turned on the TV and saw the story about Aoife Mallon, and that dreaded disease you share with her.
It touched me in a way I cannot describe. I’m trying to figure it all out, and for some reason I can’t shake it.
So I decided to do some more research on it and came across you.
I do not have the disease nor do I know of anyone with it, but I do know what it is like to be picked on and tormented by your peers, I can throw in some family members too, but it does no good especially for my soul, only brings me down.
I have found that over the years people, more so kids, are cruel. The people I have seen be cruel and what have to others are only trying to make up for something they lack. I don’t know if it’s jealousy, showing off or what. I’m at the point now where I hate people. Okay hate is a strong word so; I really dislike people in general (not everyone). I consider myself to be a Christian, not a good, one but never the less I try.
Then I hear of stories like yours and hers, about the torment you have gone thru or are going thru, and I just want to…. Go off? I’m no supper hero, by no means but you know if I were those people would not make fun out of you, anyone or me ever again.
Sometimes I feel ALMOST sorry for them (those types of people) they have no clue as to what life is really about.
Sorry I’m loosing track because I’m getting myself worked up (mad).
I must say I am inspired by your courage and strength. I wish there was something I could do more, for you and the others in the same situation. That is, other than hope and pray that you and the others will be okay.
I was wondering would you happen to know how I could contact the lady in Ireland, Aoife Mallon? I would like to contact her and tell her somewhat of the same.
I believe that God has a special place for you.
Respectfully yours,
Shawn Klecz
Solomons Maryland 10/7/04 | ||
| To: | Kelley | From: Maria, |
| oops..forgot, your hair is gorgeous too! 10/7/04 | ||
| To: | Kelley | From: Maria |
| Kelley,
You are a very pretty girl even if you deny it, I saw your pictures.
Your strength and your family are an inspiration to me. 10/7/04 | ||
| To: | Kelley | From: Amber Gompper |
| Kelley-
I think that you are here for a purpose to educate people about your condition. I do realize that some days are harder than others and that sometimes you want to run to your room were you find comfort from all of your problems.
I think that you are a very special teenager and let no one tell you otherwise. Keep reaching inside of you and show others that you have something to show them.
I hope that you continue keeping others informed. Keep the faith. 8/28/04 | ||
| To: | Kelley | From: Jamie |
| Kelley,
I'm a nurse in NC and I was deeply touched by your courage and strength. You are such a beautiful girl and have so much spirit and spunk... that is clearly evident in your smile and the twinkle in your eyes! I hope that you will maintain all of those qualities and continue to touch peoples' lives as you have mine. 8/12/04 | ||
| To: | Kelley | From: Tricia |
| Dear Kelley,
You are a true fighter and a lovely young lady! Keep the faith and know that there are tons of people who are thinking of you. Thank you for telling your story and being so brave. Keep smiling. 7/19/04 | ||
| To: | Kelley | From: Wendy |
| Hi Kelley we love you and are thinking about you here in Nebraska! Your sense of humor and great outlook on life is something that I keep with me everyday and will hold in my heart always. We will see you again soon...I promise. Love you! Wendy 7/1/04 | ||
| To: | Kelley | From: mom |
| Hi Kellbell! It's so hard to believe that you will be 13 next month. I know these last few years have been tough on you, but I have to say that you are one tough cookie! Nothin's ever going to keep you down! When you're feeling sad or lonely, or the world seems cruel at times, your dad and I are ALWAYS here if you need a hug, or someone to talk or cry to. Keep that positive atude, that sunny disposition and keep reaching out to others...you've touch many lives with your story and I'm so proud that you're my daughter.
Love and hugs!
Mom 7/1/04 | ||
| To: | Kelley | From: maria |
| tengo una niña de 12 años con esa enfermedad me gustaria comunicarme cxon mas gente que la tenga para informarme y saber que hacer...
ayudenme me siento muy triste porque no se que hacer. 4/27/04 | ||
| To: | Kelley | From: MARIA |
| TENGO UNA HIJA DE 12 AÑOS QUE TIENE ESA ENFERMEDAD Y NO SE COMO AFRONTAR ESTA SITUACION PARA DARLE VALOR A ELLA POR LO QUE VIENE ELLA TIENE 5 AÑOS CON ESTA ENFERMEDAD Y QUISIERA ENCONTRAR MAS GENTE QUE ME AYUDARA A HACER MENOS DOLOROSA ESTA SITUACION, SOMOS DE NUEVO LAREDO, TAM. MEXICO.
AQUI NO TENEMOS LA SUFICIENTE INFORMACION NI MEDICOS PREPARADOS PARA ESTO.... QUISIERA HABLAR CON PERSONAS QUE TENGAN ESTA ENFERMEDAD Y PONERME AL TANTO DE LO MAS NUEVO EN CUANTO A LA ENFERMEDAD O MEDICAMENTOS ALGO NO SE....
GRACIAS... 4/27/04 | ||
| To: | Kelley | From: Tammy Brantley |
| HI SWEETIE,
I AM THE MOTHER OF A CHILD WITH ROMBERGS SYNDROME. OF COURSE HE IS NOW 23 YRS. OLD, BUT HE HAS THE SAME TYPES OF PROBLEMS. EVEN NOW AT 23 HE STILL SUFFERS FROM HEADACHES AND AT TIMES SEVERE NOSE BLEEDS. I HOPE THAT THROUGH ALL THIS YOU WILL COME TO REALIZE THAT YOU ARE A VERY BEAUTIFUL LITTLE GIRL. I WISH THAT I COULD TAKE AWAY YOUR PAIN AND YOU FAMILIES AS WELL. I WILL KEEP YOU IN MY PRAYERS. I WOULD LIKE FOR YOU TO SEND ME YOUR ADDRESS IF AT ALL POSSIBLE BECAUSE I WOULD LIKE TO SEND LITTLE NOTES AND CARDS OF ENCOURAGEMENT. I AM A COLLEGE STUDENT GETTING MY NURSING DEGREE SO THAT I CAN MAKE A DIFFERENCE IN THIS WORLD. I AM NOW A GRANDMOTHER AND IT'S WONDERFUL. HOWEVER, MY SON IS SCARED THAT HIS SON WILL BE AFFECTED BY THIS DISEASE AND HE DOESN'T HIM TO SUFFER AS HE HAS. I WILL SEND YOU MY ADDRESS IN THIS E-MAIL. I HOPE TO HEAR FROM YOU SOON!!!!!
TAMMY BRANTLEY
MY ADDRESS: TAMMY BRANTLEY
5717 WOODMAN AVE. APT.#8
ASHTABULA, OHIO 44004 3/16/04 | ||
| To: | Kelley | From: marie claire |
| Hello kelley, i'm writting you from france and my english is so bad.i have reading your story and i wanted to bring a little sun today by our story.I'm 28 and my boyfriend has the same story.he's 40 and it start when he was 6.The life was also very difficult for him but I can tell you that for me, he is the most intellegent man that i knew with a fantastic heart.When i've met him for the first time, of course, i have seen the ill, but fastly i see only his beautifull eyes, his permanent smile and the strong in his head.The ill made him better than the other, more intelligent and now, he is a good worker:He has 4 firms, more friends than other people, respected by many people.Maby because in 1970, the ill was not knowing, he has make his life like a an, doesn't know anybody like him, he has accept this, he has always said that only intelligent people could be with him and he has let the other.Keep smiling, you seem to be so kindly, i 'm sure that one day, you will meet an intelligent man who see what you have in your heart.Gros bisous, like we say in france.I think about you. 2/25/04 | ||
| To: | Kelley | From: Debbie |
| Hi Kelley, my name is Debbie I live in London United Kindgom.
I started to suffer the same as you at the age of 7, I am now 37.I dont remember very much about it apart from the teasing and staring I suffered at school. As the years went on I had a fat flap taken from my stomach and inserted in the right side of my face in an attempt ot rectify the damage. This was sucessfull to an extent and I have carried on through my life getting stronger and stronger. I have not bothered with further surgery I am what I am and hope others accept me that way.
I have a good job in finance in the centre of London and am happy and contented. I wont say it hasnt been hard but it has, its your looks that are affected not your health, when you are down try and remember that it does make you stronger.
I would love to communicate with you and your parents more so please contact me. Debbie xx 2/17/04 | ||
| To: | Kelley | From: Aimee Johnson |
| Dear Kelley,
Hello cutie! My name is Aimee Johnson, and I am your mother’s aide at Mary Blair. We met about a week ago on your mom’s birthday. It was such a pleasure to meet such a sweet middle schooler! I read your article in a copy of the Rocky Mountain News yesterday. I found it a very inspiring story and I just wanted to share a couple of my favorite quotes with you.
"Reasonable people adapt themselves to the world. Unreasonable people attempt to adapt the world to themselves. All progress, therefore, depends on unreasonable people."
-George Bernard Shaw
"The lord is wonderfully good to those who wait for him and seek him."
N.B.: From this quote is derived the proverb, "Good things come to those who wait."
-Lamentations 3:25
Challenges are what make life interesting; overcoming them is what makes life meaningful."
-Joshua J. Marine
I hope that you find these at least a fraction as inspiring as I find you! And I hope to see you again someday soon!
Sincerely,
Aimee Johnson 2/10/04 | ||
| To: | Kelley | From: MELISSA KING |
| HELLO I ALSO HAVE PARRY ROMBERG. I AM 22 YEARS OLD. I WAS DIAGNOSED OCT. 7TH,2002. I ALSO KNOW THAT IT IS DIFFICULT TO DEAL WITH PEOPLE STARING BUT THERE WILL ALWAYS BE THOSE SPECIAL PEOPLE THAT LOVE YOU NO MATTER WHAT YOU LOOK LIKE. IT IS ALWAYS IMPORTANT TO REMEMBER THAT. I WANT TO THANK YOU BECAUSE IT WAS YOUR STORY THAT HELPED ME FIND OUT ABOUT PARRY ROMBERG. I WAS MISDIAGNOSED AT AGE 9 AND DIDN'T KNOW WHAT I REALLY HAD TILL I WAS 21. SO THANK YOU. YOU ARE MY INSPIRATION. KEEP YOUR HEAD UP! YOUR VERY BEAUTIFUL AND ONE DAY BOTH OF OUR DREAMS WILL COME TRUE. 2/9/04 | ||
| To: | Kelley | From: Cindy |
| Hi Kelly,
I saw your story and your picture on the web site. I am a nurse and I know how hard all the tests must have been for you.
My husband Bruce has Parry Romberg Syndrome too. He has Coup De Sabre type.
His nose is like yours, thinner on one side. The skin on part of his forehead is thinner, and the color is not the same.
He has told me how hard it was when he was younger.
Other kids teased him and said mean things. They hurt his feelings.
It made him feel isolated and angry.
It is hard to be "different" than the other kids, whatever the reason.
There are so many people who are "different". Maybe they lost a leg because of cancer, maybe they suffered terrible burns, some are born with mis-shaped arms or legs or faces, they may be overweight, or have no hair.
Sometimes people have things wrong inside where we can't see them.
God does not make everyone the same.
Each of us has to make the best of what gifts he gives us.
What is inside your heart, your spirit, your atude will be far more important over time.
There are Drs who can make a difference in how you look...but no one can make you a kind, considerate, thoughtful, happy person.
Those are things only you can do.
If you "hide" from your frinds and family instead of enjoying them and allowing them to be part of your life, you will feel alone. Friends are precious and important.
Real friends do not look at just the outside..they look at the inside.
When people say unkind things, just try to understand that they are immature, and need to be educated so that hopefully then, they will not keep saying mean things. You are learning about Parry Romberg and you can share what you know with them.
You should also tell them that although you did not choose to have this happen to you, they are choosing to be inconsiderate and unkind. Sometimes people are just insensitive and do not think before they speak. They don't realize that their actions and words hurt.
I know that having this condition is hard for you.
When things make people look "different" it causes them to feel self conscious.
When I met my husband, I just thought he had been in an accident. It did not, and does not matter to me.
He is a good, kind honorable person, and those are the things that really matter.
Just ask God to help you be strong and remember real beauty comes from deep inside. Even blind people can "see" the kind of inner beauty that we should all try to develop. It is in our voice, in the way we treat others, in the way we care about the way others feel.
Sometimes it is hard to talk about your feelings.
Sometimes when people bring up Parry Romberg or how it is affecting you, you may feel like not talking about it. You may try to keep them from speaking of it.
If you hold your anger and pain inside it will make you feel worse, more alone.
Open up your heart and tell your family and friends how this makes you feel. When others share it with you, it helps you feel better. It helps them understand you better too.
There will be hard times, but there will be wonderful times too.
Take care of yourself Kelly.
May God always Bless you and keep you in His care.
Cindy 1/28/04 | ||
| To: | Kelley | From: Paula Beck |
| Dear Kelley,
I just recently learned about the disease you have after I saw a Discovery Health Channel episode about an 18 year old girl from Ireland named Aoife (EE fa)who had surgery for both sides of her face. When I went online to learn more about it, I found your story in the Rocky Mountain News.
I just want you to know that no matter what happens to the outside of your body, you will always be a beautiful girl to the people who really love you. Don't ever forget that God knows what's in your heart. Anyone who is worth spending time with will take the time to get to know you and not make a snap judgement based on appearances.
It may not be much consolation, but I was teased when I was young, not because of how I looked, but because of what I didn't have or couldn't afford. Small-minded people will always find SOMETHING to be mean about, so just remind yourself that God knows what's in their hearts, too, and try not to let it get to you.
I will include you in my prayers, asking God to help you and your family be as strong as you need to be for whatever you may have to deal with in future. Take care and keep your head high - you are loved.
Sincerely,
Mrs. Paula Beck 12/9/03 | ||
| To: | Kelley | From: SHIERLY |
| be strong and take courage. you may not like everything that's happening to you or things that will happen but GOD has His reasons beyond our understanding. i can feel your mom's pain and your dad's struggle to be strong and pls. tell them that i admire their courage. kelly, always trust on GOD's promise that He will never forsake you nor abandon you for He has engraved your name at the palms of His hands. i know you will question everything and all i can do is pray for you and your family to continue to be strong. remember GOD will not give you more than you can handle. thanks for the awareness about your condition. i have never heard of it before and your sharing is a vital information. to be honest i just heard it from a friend who took a board exam recently . i search it on the books that i have i found nothing and your info provided some enlightenment. may you continue to be an inspiration to others .MERRY CHRISTMAS AND A GLORIOUS NEW YEAR. 12/6/03 | ||
| To: | Kelley | From: Dr. C.M.KIRUBAKARAN |
| 31-10-2003.
DEAR KELLY,
WITH BEST WISHES.
MAY GOD BLESS YOU.
I CAN GIVE THE SUGGESTIONS FOR THIS EVALUATE,CORRELATE, OBSERVE AND STUDY THE PATHOLOGICAL CONDITION OF THE DISEASE.
2. MRI„³ GIVES THE PICTURE OF SOFT TISSUES.
3. PET„³ ANALYSE THE BRAIN METABOLISM.
4. SPECT.
5. A PERFECT MOLECULAR STUDY USING ADVANCED MOLECULAR DIAGNOSTIC TOOLS ARE USED IN RESEARCH OF THIS DISEASE.
6.PROBE THE FOLLOWING„³
* STUDY OF FACIAL PROTEINS.
* STUDY OF FACIAL MUSCLE ACTIVITY.
* STUDY OF MECHANISM (WASTING OF MUSCLES) DURING SEVERE
EPISODE OF DISESE.
* WASTING OF FACIAL MUSCLES DURING AGING.
7. USING THE SPECIALIZED KNOWLEDGE A NEW FIELD NAMELY,
PAEDIATRIC NEUROLOGY (A EMERGING SCIENCE).
8. STUDY OF BRIN CORTICAL AREAS RELATED TO THIS DISEASE.
9. IDENTIFICATION OF GENES AND THEIR MUTATION.
* NO OF GENES INVOLVED.
* NO OF MUTATIONS.
* DEFICIENCY OF CELLULAR SUBSTANCES.
* STRUCTURAL ABNORMALITY.
10.RECOGNITION OF THIS DISEASE DURING FOETAL LIFE USING CLINICAL
GENETICS.
11. MOLECULAR MECHANISM
* STUDY OF PROGRESSIVE MECHANISM.
* STUDY OF HALTING MECHANISM.
* STUDY OF REPAIRING MECHANISM.
12.VASCULAR PHENOMENON STUDIED.
13. ENHANCEMENT DUE TO MICROORGANISM(VIRAL, BACTERIAL, FUNGAL ..ETC).
14. SURGICAL MEASURES
A TEMPORARY OR PERMANENT SOLUTION CAN BE MADE
BY THE SURGEONS.
THE CAUSE OF THE DISEASE HAS TO BE ELICITE FIRST TO AVOID
RECURRENT EPISODE IN FUTURE. THIS IS IS VERY IMPORTANT
BECAUSE THE AETIOLOGY THIS DISEASE IS A MYSTERY.
I PRAY TO GOD FOR YOUR RECOVERY, WELL BEING.
YOURS 10/30/03 | ||
| To: | Kelley | From: Sarah's Mom |
| My daughter is 16. She isn't bothered TOOO much by other people staring or asking questions. Occasionally some (rude) person will make a comment. Her Grandpa came up with a great response when Sarah was about 10. "When I am older I can have surgery to get it fixed...but you'll always be an *%%&?#$!! 10/14/03 | ||
| To: | Kelley | From: brenda |
| Alright, it won't let me send a web address... It's an article from "Rocky Mountain News" about a boy named Justin. 9/18/03 | ||
| To: | Kelley | From: brenda |
| slash)justin(forward slash)6(dot)shtml 9/18/03 | ||
| To: | Kelley | From: Brenda |
| God has a purpose for each and all of us. Look inside your heart to see who you are, not the mirror, and you will find that there is nothing wrong with you. You are beautiful.
Words from the song Reflection from the movie Mulan;
"Look at me, you may think you see, who I really am. But you'll never know me. Every day is as if I play a part, now I see, if I wear a mask, I can fool the world, but I cannot fool my heart."
I found this while reading the following article... 9/18/03 | ||
| To: | Kelley | From: amanda warr |
| dear kelley hi my name is amanda boyfreind has parry romberg he has it sice he was three years old he hate him self at time i have the time to help him throw it dont feel bad i know how hard it has been martin mum and dad have suped him 8/23/03 | ||
| To: | Kelley | From: jessica roybal |
| DEAR KELLY,
WELL IT'S ME AGAIN AND I JUST WANTED TO SAY HI AND HOW ARE YOU DOING.WELL IT'S BEEN A VERY LONG DAY.BUT THE BEST PART OF IT WAS SENDING E-MAILS TO YOU AND ALSO SHARING MY APPINION ABOUT YOUR DISEASE.
WELL I HAVE TO SPLIT. HOPING TO SEND YOU AN E-MAIL SOONER OR LATER.
SINCERLY,JESSICA ROYBAL
P.S.TELL YOU'R MOTHER I SAID HI AND HOPING TO SEE HER AGAIN SOMETIME.OH AND TELL HER TO VISIT MESA AGAIN.
HAPPY HAPPY HOPES!!!!!!!!!!! 6/18/03 | ||
| To: | Kelley | From: JESSICA ROYBAL |
| Dear Kelly,
How are you.You may not remember me
but I was one of you'r mom's student.Now I may not have a disease but I may have a message that will probaly cheer you up.Now if I had this disease I would have to make the best of it.Now if some one were to make fun of you just remember you have something they do not.
sincerly,
Jessica Roybal 6/17/03 | ||
| To: | Kelley | From: Mar |
| Hi,
My name is Mar and I am 7 yrs old and I have Romberg's Syndrome too. It's not fun for me that they make fun of you. Don't listen to them, it is not funny at all. I would like for us to keep in touch, is that ok? 6/11/03 | ||
| To: | Kelley | From: Linda |
| Hey Kelley,
I'm Linda from Australia, the land of kangaroos and koalas! :P hehe. Just wanted to pop in and say hi! I've got rombergs too!! I was diagnosed about...errr... i think four weeks ago. I've been in and out of doctor's offices a lot too! I don't mind, I get to go home early! I'm turning seventeen this year, I'm in my last year of school. You will come across ups and down in life, just look past the downs and look forward to the ups!
Feel free to e-mail me if ever you're bored. I'll try to reply as soon as possible! Take care and best wishes for you and your family!
"here" for you,
...Linda 5/17/03 | ||
| To: | Kelley | From: TRAVIS WALKER |
| I JUST WANTED TO SAY I HAVE ROMBERGS TO. SO I FEEL WE HAVE A COMMON BOND.I DIDN'T NOTICE THIS UNTIL I WAS 17. AT THAT AGE YOU KNOW HOW CRUEL KIDS CAN BE. I WOULD LOCK MYSELF UP IN MY HOME AND WOULDN'T COME OUT FOR DAYS. SCARED OF THE TEASING AND TAUNTING AND KIDS CALLING ME SMASH FACE.GROWNUPS WALKING AWAY FROM ME BECAUSE THEY THOUGHT IT WAS SOMETHING CONTAGOUS.IT HURT SO BAD I WOULD CRY FROM SUN UP TO SUN DOWN.MY FACE WAS SINKING IN ON THE RIGHT HAND SIDE OF MY FACE AND I COULDN'T DO ANYTHING ABOUT IT.SCARY IT WAS.MY EYE SUNK DEEP INTO MY FACE.AS SILLY AS IT SOUNDS I HAD ALWAYS WANTED TO BE A MODEL. PEOPLE USED TO TELL ME I LOOKED LIKE ONE AMD I SHOULD BE ONE.WELL, NATURE THRU ME A CURVE BALL AND IT LANDED DEAD SMACK INTO MY FACE.I HAVE AN INDENTION IN MY HEAD WITH A BIG BALD SPOT THERE AND MY EYE THAT IS SUNK IN TAERS ALL THE TIME AND STAYS RED.I HAVE NO EYEBROWS NOR LASHES THERE AND I WOULD USE AN EYELINER TO TRY TO COVER IT UP.MIGRAINES SO BAD I COULDNT STAND THE SMELL OF FOOD.WELL I FINALLY FOUND A DOCTOR OUT OF TOWN THAT TOLD ME WHAT WAS WRONG.NOONE IN HERE SALISBURY (DOCTORS)KNEW ANYTING ABOUT IT.AT THE AGE OF 26 I WENT AND HAD THE FIRST OF MY SURGERIES AND THAT IS AS FAR AS I COULD GET BECAUSE THE MONEY.I HAVE SINCE STOPPED PITYING TRAVIS (MYSELF)AND DECIDED TO GET MY LIFE TOGETHER. SHOW THE WORLD THAT I CAN BE JUST AS GOOD AS THEY ARE.I DROPPED OUT OF SCHOOL WHEN I WAS 16 BECAUSE OF THE TEASING BUT AT THE AGE OF 33 WENT BACK TO SCHOOL GOT MY HIGH SCHOOL DIPLOMA AND WAS VOTED VALIDICTORIAN OF MY GARDUATING CLASS AND WENT INTO COLLEGE IMMEDIATLEY.I AM MAJORING IN PSYCHOLOGY AND HAVE A GPA OF 3.5 ON THE DEANS HONOR LIST AND AM PLANNING ON HELPING PEOPLE WITH ROMBERGS.THAT MAY NOT HELP YOU OR YOUR SITUATION BUT I JUST WANTED TO LET YOU KNOW THAT NOT EVERY STORY IS SO GRIM AND THOUGH IT SEEMS LIKE YOU NEVER HAVE ANYONE WHO UNDERSTANDS THERE IS SOMEONE.
SINCERELY
TRAVIS WALKER 4/15/03 | ||
| To: | Kelley | From: Pat Bulseco |
| My son Nick who is now 20 began symptoms of Rhombergs when he was 8 -- we did not know what he had until he was 17. Dermatologists would prescribe cream, kids would call him "spot" -- it started with a white spot on his cheek, progressed to a large triangle that turned darker and then he started losing tissue. People ask him -- What's wrong with you? He had no idea -- so he began to answer "I am such an awesome kid, perfect in so many ways, that God touched my cheek with a spot to keep me humble" -- and he has just stuck with that. Finally after many dotors we were diagnosed when he was 17 -- he has lost all the tissue on one side of his face and now has a line through his eyebrow. I was very angry at so many people -- the dermatologists, the dentist, the orthodontist as no one knew what it was. Then I have had friends whose children have cancer and other life threatening diseases and I am thank ful that my son is otherwise healthy. After consulting the Mayo clinic and seeing what surgeries have done to others (most are not that helpful) -- it seems the best course of action is no course of action. The Mayo Clinic feels 2 years of complete remission is important prior to any reconstructive surgery as does our local plastic surgeon (Dr. Wells, Long Beach, CA). I think having a great atude and finding something he is very good at (golf)is the best medicine. Nick is just completing City College and will be going away to University of California at Santa Barbara in September. He is an avid golfer (and on the college team), works part time at a golf course, has a nice group of friends -- even a very cute girlfriend -- I think yhe biggest lesson I learned from this is beauty is only skin deep. Real beauty comes from within. We are taking pictures every 6 months and checking in with our plastic surgeon and when we hit remission he will decide whether to have surgery or not. In the meantime life is really worth living -- why else were we born? 4/11/03 | ||
| To: | Kelley | From: Andrea DiLorenzo (DBC) |
| Hi there Kelley! I was just thinking about you and wanted to drop in and say "hi"! I need your email address so we can keep in touch a little better, because I think about you all the time! You are such an inspiration! I hope you're feeling well! How's school going? School isn't going too well for me, I have way too much homework;) Write me back, I would love to hear from you!
LOVE YOU!
Andrea 2/11/03 | ||
| To: | Kelley | From: katelyn |
| my name is katelyn and i am 8 years old. How are you doing? I have the same thing you do. Are kids talking about you? Kids are talking about me too. 2/4/03 | ||
| To: | Kelley | From: Lois |
| Hey babe,
I hope everything works out for you. I'm sure it will. you're obviously beautiful and i'm sure you'll get older, get married, have a good job...whatever you want.
good luck through it all 1/14/03 | ||
| To: | Kelley | From: Maria Lohn (43)from Germany |
| Hi Kelley !
First, excuse my not so perfect english , please . I´ve reading your story in a german magazine , and I wish for U , that you find a lot of friends on your continues way of life. And I observe your continueing life with interesting. I´m interested in your physicalogic and psychological status . Me and my family (I´ve got 3 Children ) wish you all good and stronghold.
All greetings from germany
Maria Lohn (Cologne/ germany) 1/10/03 | ||
| To: | Kelley | From: Renata |
| Dear Kelly,
I just read your bio. Today was the first time I'd heard of Parry-Romberg syndrome. I am a dentist with the Army and one of my patients had the disorder. He had to educate me about it.I can't imagine how difficult it is living with this syndrome, but you know what? Your courage has touched many hearts, and you are a symbol of hope and strength to many. Kelly, you are a beautiful girl, and Jesus loves you so much just as you are now. Hang tough. I will be praying for you.
Renata
ps: Romans 8:38-39 1/3/03 | ||
| To: | Kelley | From: Dietke Helmig |
| Hi Kelley,
my name is Dietke Helmig.
I come from Germany, I live in a town near by a Düsseldorf, in Duisburg.
I'm a girl, I'm eleven years old.
Don't worry about Romberg. If you live in my neighbourhood, you could be my friend. I have only few fiends too because I have ADD (attention-deficit-disorder). Be strong and keep on going your own way. It would be nice if you answer with an e-mail to me.
I wish you a happy New Year!!!!!!!
Oh, I'm sorry,I forget: your girl-friend : Dietke Helmig 12/27/02 | ||
| To: | Kelley | From: Dietke Helmig |
| Hi Kelley,
my name is Dietke Helmig.
I come from Germany, I live in a town near by a Düsseldorf, in Duisburg.
I'm a girl, I'm eleven years old.
Don't worry about Romberg. If you live in my neighbourhood, you could be my friend. I have only few fiends too because I have ADD (attention-deficit-disorder). Be strong and keep on going your own way. It would be nice if you answer with an e-mail to me.
I wish you a happy New Year! 12/27/02 | ||
| To: | Kelley | From: tina wells |
| you are a very beautiful girl!!!! everyone has dficulty in life yours is a little different then most but you will suceed withall your goals!!! good luck to you in every thing you do!! you will get thru all of this and suceed!!! you are a very special girl with a great mom!!! try to talh to her when you need someone to talk too!!!! good fortune to you god will find a way to help you to suceed!!!!!!!!! love tina wells 12/25/02 | ||
| To: | Kelley | From: Angela |
| Dear Kelley!!!!!
how are you? im fine! my name is angela!
im 28years old! and i want write with you! please tell me anything from you and i tell you all from me and from my family and from germany! my english is not so good and i hope you understand this!???? i wish you and yours family a marrychristmas and a happy new year!!!! i wait of an answer from you!!! bye, bye Angela 12/23/02 | ||
| To: | Kelley | From: nadia |
| Hi!
My name is Nadia, i was born 40 years ago with a desease in my face. I´ts not Romberg, but it looks also bad. My left Sight of face is like 2 numbers bigger than the right.
So i know, what it means, when al the people on the street stars at You , ask you stuppied questions or are laugthing
about you.
But don`t give up. I know like you know: You are also human like all other people.
You`ll manage your little life by your ownself! I am sure. And i mean it is good, that you keep the contact to all the other Romberg sick persons, they`re writing to you.This is very important for your psychical, your soul, your body, your life, perhaps your healing some day.
I wish all the best.
Sorry, my am.english is not good. Cause i`m from germany 12/23/02 | ||
| To: | Kelley | From: Isa |
| Hi Kelley!
I have heard of your destiny in a German magazine.
I admire you, that you set so much courage to be able to live with your illness.
Don't give up the faith in God!
I wish you all best, Isa from Germany! 12/18/02 | ||
| To: | Kelley | From: claudia barbara,germany |
| HI KELLEY SWEETY!I HAD READ YOUR REPORT IN THE GERMAN MAGAZINE AND I THINK YOU ARE A SMART NICE SWEET GIRLIE!PLEASE THINK POSITIVE OF YOURSELF BECAUSE YOU ARE VERY NICE SWEETIE! I LIKE YOU ITS NOT IMPOSSIBLE FOR ME HOW YOU LOOK LIKE(YOUR ILLNESS!!)YOUR CHARACTER IS IMPOSSIBLE AND YOUR PERSONALITY SWEETIE!I AM A HALF AMERICAN TOO!PLEASE BE CARE FOR YOURSELF KELLEY I LIKE YOU VERY MUCH !MERRY CHRISTMAS FROM GERMANY AND A HAPPY NEW YEAR YOURS SINCERELY CLAUDIA BARBARA BALDWIN ;-) 12/15/02 | ||
| To: | Kelley | From: Rosemarie and Norbert |
| Dear Kelley,
we read a story about your rare desease in a german magazine and want you to know that only stupid people don´t recognize who beautiful you are. Try to avoid always to think about what happen with your face - it´s more important what you have inside - your brain and your heart for example. Believe us - nice faces of beautiful people always become older and less beautiful - stupidness stays. We are sure that you can manage your life due to your other strengthnesses.
We wish you a merry christmas.
Rosemarie and Norbert Maier
Düsseldorf, Germany 12/14/02 | ||
| To: | Kelley | From: Evelyn, Carol's mother |
| Bless you, Carol suffered a lot of stupidity as a child, & still times as an adult, but she has courage. We want to encourage to live and enjoy life, you are a wonderful gift to all of us from God. Please feel free to contact Carol or me, we love you. Evelyn 12/13/02 | ||
| To: | Kelley | From: Evelyn, Carol's mother |
| Bless you, Carol suffered a lot of stupidity as a child, & still times as an adult, but she has courage. We want to encourage to live and enjoy life, you are a wonderful gift to all of us from God. Please feel free to contact Carol or me, we love you. Evelyn 12/13/02 | ||
| To: | Kelley | From: Carol - A victim of Romberg's |
| Hi Kelley, I am 43 years old now and I can understand what you are going through, as I have been there myself. It isn't easy to live with this disease, but the Lord Blesses us in many different ways. I know what it is like to be treated like I am not intellig | ||
