Donna Sperry
Below is a message I received via e-mail:
Half of her face is wasting away...yet she is an inspiration to many! Please help us spread awareness about the hurtful affects of teasing, bullying, and staring. Our daughter is Kelley, a spunky 14 year old. She suffers from a disease which is causing half of her face, forehead, skull and brain to slowly waste away. We would love for you to use our story to promote good amongt teens and at the same time, we will be bringing attention to this facial disfiguring disease which has attracted a lot of attention. Please help.
This is the story of a mother's love and my attempt to honor her request to -
"Please help".
The Love of A Mother
by Donna Sperry
EXCERPTS FROM DONNA'S SPERRY'S JOURNAL:
- "I will always wonder, was there something that I did to cause this? Regardless of what the doctors say, that thought haunts me."
- "My crying really upsets her, so I've given myself a time and place to 'let go,' usually the middle of the night if I can't sleep, or the early, early morning when I'm lying in bed."
- "I refuse to just do nothing! The hardest thing is the wait-and-see-what-happens approach that the majority of doctors want us to take.
E-MAILS TO KELLEY
On teasing and being different
From: Kelley
To: Romberg Friends
I am Kelley Sperry from Colorado. I'm 9 years old. I want to know what other people with Romberg's do about people teasing or staring.
From: A Romberg friend
To: Kelley
Hi Kelley. I think that having people stare is one of the hardest parts of having Romberg's Syndrome. I know very well what it is like to be having a very nice day out and then feeling that it is spoiled by some one staring at me. If you can, just try to ignore it and go about what ever you are doing.
From: A Romberg friend
To: Kelley
Hi Kelley. Romberg's affected the right side of my chin and above my right upper lip. If I didn't wear makeup, strangers would often say, "Oh, did you just have oral surgery? Your mouth is so swollen." I would just say yes. I knew it was a white lie. But it was just too difficult and lengthy to explain Parry-Romberg Syndrome.
From: A Romberg friend
To: Kelley
When my face first started to change, it looked like I had dirt smudged on it. It really DID look like dirt, but I used to get very sick of people telling me that my face was dirty! Try to keep your chin up, and remember that if you can get through this, you can get through anything!
From: A Romberg friend
To: Kelley
Kelley, every time someone looks at you, smile back at them. They will wonder what you know that they don't. I have done this for 52 years, and it works. Each person has something they wish they could change about themselves. Believe me, we with Romberg's are not the only ones, although we feel that way sometime. Always hold that pretty little head up and smile. That smile can work wonders.
What is Parry-Romberg?
Parry-Romberg syndrome is a rare disorder characterized by slowly progressive deterioration (atrophy) of the skin and soft tissues of half of the face (hemifacial atrophy), usually the left side. It is more common in females than in males. Initial facial changes usually involve the tissues above the upper jaw (maxilla) or between the nose and the upper corner of the lip (nasolabial fold) and subsequently progress to the angle of the mouth, areas around the eye, the brow, the ear, and the neck. The deterioration may also affect the tongue, the soft and fleshy part of the roof of the mouth, and the gums. The eye and cheek of the affected side may become sunken and facial hair may turn white and fall out (alopecia). In addition, the skin overlying affected areas may become darkly pigmented (hyperpigmentation) with, in some cases, areas of hyperpigmentation and patches of unpigmented skin (vitiligo). Parry-Romberg syndrome is also accompanied by neurological abnormalities including seizures and episodes of severe facial pain (trigeminal neuralgia). The onset of the disease usually begins between the ages of 5 and 15 years. The progression of the atrophy often lasts from 2 to 10 years, and then the process seems to enter a stable phase. Muscles in the face may atrophy and there may be bone loss in the facial bones. Problems with the retina and optic nerve may occur when the disease surrounds the eye.
Is there any treatment?
There is no cure and there are no treatments that can stop the progression of Parry-Romberg syndrome. Reconstructive or microvascular surgery may be needed to repair wasted tissue. The timing of surgical intervention is generally agreed to be the best following exhaustion of the disease course and completion of facial growth. Most surgeons will recommend a waiting period of one or two years before proceeding with reconstruction. Muscle or bone grafts may also be helpful. Other treatment is symptomatic and supportive.
What is the prognosis?
The prognosis for individuals with Parry-Romberg syndrome varies. In some cases, the atrophy ends before the entire face is affected. In mild cases, the disorder usually causes no disability other than cosmetic effects.
What research is being done?
The NINDS supports research on neurological disorders such as Parry-Romberg syndrome with the goal of finding ways to prevent, treat, and cure them.
Organizations that help:
Trigeminal Neuralgia Association
2801 SW Archer Road
Gainesville, FL 32608
tnanational@tna-support.org
http://www.tna-support.org
Tel: 352-376-9955 800-923-3608
Fax: 352-376-8688
P.O. Box 1968
(55 Kenosia Avenue)
Danbury, CT 06813-1968
orphan@rarediseases.org
http://www.rarediseases.org
Tel: 203-744-0100 | Voice Mail 800-999-NORD (6673)
Fax: 203-798-2291
E-MAILS FROM ROMBERG FRIENDS AROUND THE WORLD
From: Kelley
To: Romberg Friends
Hi. Thanks for sending mail to me. I love coming home to find all my notes. Kelley Sperry
From: A Romberg friend
To: Kelley
I am from England. I'm 11 years old and I will be having surgery on the Romberg's on my face in August. Did you know there is a girl in Ireland who has Romberg's, too? I write to her. Please e-mail me back. By the way this is my first e-mail. Bye!
From: A Romberg friend
To: Kelley
Hey . . . what's up? I think it's cool to be in touch. Do you play any sports? I do. I play softball, basketball and I cheer. Basketball is my favorite. Do you get pains on the side of your face like I do? Mine is just a mild case of Romberg's. . . . Well, I got to go to softball practice now. Buh bye.
From: A Romberg friend
To: Kelley and Donna
My girlfriend just found the Romberg group on the Internet and called me. I was ecstatic. I read, I copied and I cried. I thought I was all alone in this world. Wow, over 200 of us! This group is an answer to my prayers.
E-MAILS ON DOCTORS AND SURGERY
From: Kelley
To: Romberg Friends
I had to have a blood test yesterday to see if there is anything wrong with my thyroid. It hurt when they pushed on my neck. I cried, but that was OK. I sat on my dad's lap. He is a paramedic and he held me tight. I still cried and it stung, but then we got to go to Jamba Juice. My Grandmommy and Pop-Pop were visiting from Illinois, and we went up to the mountains and swam in the river. I laid in the river with my dad. Can you tell me more stories? It makes me feel better when I know there are more people like me.
From: A Romberg friend
To: Kelley
I am 18 years old and about to graduate from high school as class president and all-American football player. I have been in homecoming and prom court. All of this after having Romberg disease in my face and having surgery to fix it. I will need one more face-lift. I have had seven surgeries, and I feel for you. It is a crappy disease. But trust me, good things will come. I have to look at my disease every day in the mirror, and I look back with a smile because I know God has special things in store for me and you.
From: A Romberg friend in Australia
To: Kelley
Dearest Kelley. Our son is just 5 years old and cannot read or write yet. I am sure that when he can, that you two will write to each other nonstop. He hates MRIs, too -- cries and complains all the way through it -- and as for taking blood, LOL. He has to be held down for his needles and blood test.
Maybe when your family is sad, you could give them all the tickle treatment to make then happy again. You start the tickle treatment by saying, "Arms up, Mum," or whoever it is you are trying to make happy. Then walk up to them and give it to them under the arms until they promise to be happy for you.
Write back soon, Kelley. Our son does not know what he is going through yet.
When he does find out, he will need you, too.
E-MAIL SUPPORT FOR DONNA
To: Romberg Connection
From: Donna
It has been a year since the "bomb" dropped. I don't know what we would have done without The Romberg's Connection. Thanks for all the kind words and support. I do want to share something but it is more on a selfish note. It's about me . . . the mom of a daughter with Romberg's. I have lost so many friends . . . or people I thought were friends. I have changed, my priorities have changed and I feel responsible for these failed relationships. I feel intense loneliness. I'm not sure what happened.
From: Marilyn
To: Donna
Having Romberg's is a lot to deal with. Since it is so rare, people often just do not know how to relate to us, and so when they say nothing, we feel rejected. I felt that way many times during my surgery process. People just did not know what to say to me, so they said nothing and that hurt very deeply.
From: Shonna
To: Donna
Howdy from Texas and a big thank ya'll from Amber and
myself! Amber is 4 years old, and we are learning everything we can at this point. We haven't had any treatment yet because we have been told that there is nothing that can be done. We have never been parents to stop at "There is nothing that can be done," so we are vigorously researching every avenue! Our main focus right now is prayer for strength and knowledge. My husband and I have six children. Amber is No. 5 in the lineup, so you can see why we do not take "There is nothing that can be done" too seriously.
From: Donna
To: Deborah, a Romberg's sufferer and mother of a diabetic and epileptic child
Your words will keep me going for a very long time! You really understand and I'm so glad that you know what I am talking about! Wow! Nothing seems more important now than a healthy family, quiet time with my thoughts and God, and an intact, healthy, loving relationship with my husband. I'm even enjoying reading for fun now! You and your family have suffered so much. I hope I will be that strong one day. My friends used to be such a huge part of my everyday life
. . . and quantity seemed to matter more than quality. We have a pool, and if it wasn't full of friends, friends' kids and the calendar booked with dinner guests . . . I was not
content. What was that all about? I always thought my kids loved having all those people around, but I learned that they liked it better when it's just us, and that I would pay more attention to them. My priorities seem so clear now. . . . God, family, teaching, and for right now . . . getting the word out about Romberg's.
