Variety Teen Sarah has been a part of the Variety family since she was three years old – she will be 18 in April. Variety St. Louis has provided access to many pieces of medical equipment that have helped her as she has grown up.
Sarah’s mom, Sandy, recently shared Sarah’s story with us. You can read it below – in her own words – and learn how powerful the right equipment can be for a child (or teen) with special needs.
Sarah has Dravet Syndrome, a severe form of epilepsy. She had many seizures as a baby, which were never controlled, despite multiple seizure medications. Two weeks before she turned three, Sarah had a very prolonged seizure. The doctors at the hospital were not able to stop it for five hours. This caused a global hypoxic brain injury, and a 28-day coma. Sarah was hospitalized for four months following this seizure, and could no longer walk or talk.
Our first piece of equipment Variety helped with was Sarah's first wheelchair, which we needed when we finally got to bring her home. We were devastated about what had happened to our daughter, and were trying to learn how to navigate this new chapter of our family’s life. We were also faced with enormous medical bills from the months of hospitalization. Variety stepped in at that time and provided the wheelchair, which was such a huge help financially, and also made us feel that we were not alone in our new situation.
When Sarah got a little bigger, Variety gave us a car seat, which allowed us to safely transport her. When she got too big for that, Variety equipped our van with a lift so that she could be transported in her wheelchair. So Variety basically gave Sarah the ability to go out into the community, and our family a way to include her when we went places. We are very thankful for this.
Sarah also received a Lite Gait system that she used for many years of physical therapy. This system allowed us to retrain the connection between her brain and her legs, and after many months of work she began to initiate her own steps. She took up to 158 independent steps in the partial weight bearing harness on the treadmill.
Sarah also received a bicycle from Variety a number of years ago, which she loved to ride out on our deck. It gave her a lot of enjoyment, plus it was great for her joints and muscles, and her circulation.
Variety also provided a stander for Sarah. I remember our insurance saying that it was “experimental” and they would not cover it. The stander was very important for her bone density, digestion and respiratory function. And it was great for her to just be upright and at eye level with everyone else. She has not been able to use it for the past year or so due to health problems, but we have not given up hope that she will be able to return to using it.
Most recently, Variety provided a wonderful bath/toilet chair for Sarah. It supports her very well so that she can be comfortable and safe. Her previous chair did not support her back comfortably. She has severe scoliosis and the new chair holds her upright and also tilts and adjusts so that we can clean her properly, and so we can wash her hair without getting water in her face. It also saves the backs of her caregivers as the overall height of the chair adjusts. With her previous chair, my back would ache by the time I finished bathing her. The new chair also is very easy to roll down the hall and into the shower, unlike her previous chair.
In the past couple of years. Sarah’s health has declined and she is not as active as she used to be. Sarah’s life has had a lot of limitations, but our goal has always been to provide her the best quality of life as we can. Variety has been a huge part of Sarah’s quality of life throughout the past 15 years. Our family is, and will always be, very very grateful.