Kelley Heilsberg

Kelley, who is now three, seemed like a perfectly normal baby, except she was a complete nut. She was extremely social, laughing at everything. All you would have to do is laugh and she would laugh back. She babbled, waved bye-bye, and had good hand use. We became a little concerned when she did not learn to sit up like her playgroup friends, but the doctors said she just had low muscle tone. Shortly after her first birthday, Kelley started to withdraw. Then we knew something was seriously wrong. We suspected autism. When she was 15 months old, however, the doctors told us she tested positive for Rett Syndrome. We were told that she would lose the use of her hands, never talk, and most likely never walk. It was just impossible to believe. How could this happen if she had such good hand use and started babbling before most of her playgroup friends? We thought she must have a mild case of it.

Sure enough, when she was 22-months-old, she lost the use of her hands. She no longer was able to play with her favorite toy, a small baby doll. She could no longer feed herself and the babbling stopped. Now, Kelley constantly puts her hands in her mouth (a common occurrence in Rett Syndrome) and has to wear splints on her arms to prevent cuts on her hands and infectious rashes on her face. Kelley is completely dependent on others now. Because she can’t talk, she has to rely on others to guess when she is hungry, cold, tired, or in pain. In addition, she suffers from acid reflux and scoliosis. She hasn’t had seizures yet (most Rett kids do), but her EEG indicates that she probably will.

One thing remained the same after Kelley’s regression. She is still a complete nut. She still laughs a lot, and everyone comments that she has the most contagious giggle. She thinks her six-month old baby brother is particularly funny. She loves it when he lies on top of her and doesn’t even mind when he spits up on her. Despite her severe handicap, she can still participate in some things that other three-year-olds do. She loves swimming, going to music class, hiking with daddy, bike riding, and most of all watching Barney videos. In fact, Kelley would love to watch Barney during her every waking moment. She really is a Barneyaholic.

Kelley spends a lot of time doing physical therapy (while watching Barney of course) and even takes therapeutic horseback riding lessons twice a week (which she also loves). We’ve seen some improvement over the last few months. Kelley is starting to get a little stronger. We’re hoping that she may walk some day after all. Especially since doctors now know what causes Rett, the cure, or at least treatment, may make Kelley’s dream of walking come true. And hopefully she will be able to hold her doll again some day.

Kelley’s family

Dina and Stuart (Mom and Dad)
Kevin and Kenny