A Tribute to the Women of Rett Syndrome |
Kimberly
At fifteen months, she could say a few words, finger feed herself, play patty cake and clap her hands. Within what seemed like one week, she lost all of those skills and started hand mouthing. We thought she was teething and it took us a few days to realize that she had stopped talking and doing anything with her hands other than putting them into her mouth. We went back to the doctor and were told it wasn't CP, but they had no idea what it was. Kimberly was always social as a small child and had fantastic eye contact. She never went through any of the screaming periods that some children do. When she was three years old we changed neuro's. The new doctor told us within fifteen minutes that she thought Kimberly had Rett syndrome. They did a few tests to rule out similar diseases and we sent a video of Kimberly to Houston's Rett Clinic. Kimberly was officially diagnosed with classic Rett. Of course, at this time it was a clinical diagnosis. Kimberly has never walked or even stood for transfers. Her health has always been a little fragile mainly because of her asthma. She had scoliosis surgery when she was twelve. Over the years, she has had various health and physical issues including several pneumonias, gall bladder surgery and hamstring and heelcord surgery. She also has serious issues with reflux and constipation. Kimberly is now 23 years old and still lives at home with us. She is a very, very happy young woman. She still has that great eye contact and is just a social butterfly. She LOVES people! Her favorite thing in the whole world is for someone to just sit down and talk with her. She attends a day program at our local Cerebral Palsy center. She loves her friends and we are just thrilled with the quality of the program. We travel a good bit and we take her wherever we go. She is our little Angel Bug. Sincerely, Phil & René Davis - Parents of Kimberly 22/RS Mutation: R255X |
Kimberly was born on August 22, 1985, the youngest of three. She was full term and healthy. She did sleep too much for her first few months. When it got time for her to start hitting milestones, she didn't. No rolling over or sitting up on her own. We really started to worry when she was around seven months and still not doing those things. She was developing normally in all other ways. But, she would not bear weight at all or sit up or roll over. At 11 months, our pediatrician sent us to an neurologist. They did every test they could think of and all the results were all normal. They suspected that she might have mild damage to her brain that was not showing up on any test and she was diagnosed with very mild cerebral palsy. The dr's told us she would probably develop normally except that she would either be delayed walking or maybe never walk.