In corresponding with Kelley's mother, Donna, I was interested to know more about living with Parry Romberg syndrome.
Q. It sounds as if Kelley's strokes have been the most difficult part of the disease. Could you tell me more about what Kelley has experienced, and what types of effects the strokes have had on her?
A. Kelley has had at least 8 strokes that we know of. The last one was just a few months ago. . . . They sent her for a C-scan of the brain saying that there was recent damage done but that there was nothing more to do. The facial issues are a huge concern of course, but it’s the possibility of a more severe stroke that has us always on edge. Otherwise, she lives the life of a normal teenager with no restrictions.
Q. What other symptoms has the progression of Parry Romberg caused for Kelley? How have these symptoms been treated?
A. The worse obvious part is the darkening ‘bluish” color around her affected eye where the bone and soft tissue and muscle are wasting away. No one thinks twice about asking a kid about a “black eye” (even nice caring people) . . . so her “issue” is brought to attention now more than the asymmetry of her lips, cheek and nose.
She still suffers intense headaches at times, which will cause her to become somewhat withdrawn. She always has pain killers on hand and the school has been very supportive in allowing her to call home if she needs to, or just take some time out in the nurses office.
She has grey patches of hair (part of the disease) which we now take care of easily (but expensively) with a trip to the hairdresser for highlighting! She feels great about being able to do something, and we don't hesitate!
Kelley has adjusted nicely to her lack of peripheral vision caused by a stroke. She simply has the ability to conform, or adapt to the changes that occur. We are grateful for that.
Q. You mentioned that the publicity from Kelley's story has brought you in contact with other families affected by Parry Romberg. Could you describe your family's and Kelley's experiences with this? How has being in contact with others with the disease affected your family and Kelley?
A. It helps people to know that they are not alone, and that our experience can help other people. It feels good to be able to reach out and support others when you know exactly what they are dealing with--when so many, including the medical professionals, have no clue still.
My husband Jay and I understand the incredible sadness and fear--especially when Kelley was first diagnosed. When someone tells you your child has cancer, or diabetes, I think it’s horrible--but there is some frame of reference. We had never heard of [Parry Romberg syndrome], and when my husband, a paramedic, and I researched it at home, and saw bone chilling words like seizures, wasting away bone, tissue, eyes sunken, epilepsy--we dove into despair. We are very thankful that we had The Romberg Connection to turn to. It was a very small group when we first contacted them. We’ve grown so much. More and more people are being diagnosed correctly and earlier since we’ve begun to get the word out. There is so much fear in the unknown, and when something has a name, it seems somehow less frightening.
Q. Kelley's story has touched many people, and provided awareness of Parry Romberg syndrome. How has Kelley been doing?
A. People can look at a person in a wheelchair and realize right away that they’ve lost a leg, or [are] paralyzed or whatever. It takes people a longer stare to try to make some sense out of a face that should be somewhat symmetrical, but isn’t. I think Kelley’s used to it, and hardly notices.
I could go one and on about the notes she received from Iraq, lunch with the mayor, and a supportive letter from our state senator who called her a hero. . . . But it’s the little things: the abundance of love and support from family, and the great friends we’ve met during the 2-1/2 years since moving to our new little Colorado town. We are so lucky to have the support of the folks on the Romberg Connection, the team of doctors and dentists who have taken the time to educate themselves about the disease--this is what keeps us going. And of course, Kelley's brothers, Dillon now almost 20, and Jesse age 15, who remain extremely protective of their little sister.
NB: Donna Sperry is looking to publish a book she has written called, Light in the Mirror: A Mother's Hope for Her Daughter's Struggle Against a Rare, Disfiguring Disease, about Kelley's experiences with Parry Romberg syndrome.
Last updated 1/10/06
