Madison loves the color pink and her favorite movies are Frozen and Moana. Her room is decorated with Doc McStuffins and she enjoys hanging out with her younger brother. Madison has also been diagnosed with Ohtahara Syndrome (OS), an extremely rare epilepsy syndrome that causes seizures.
OS is so rare that it took doctors a long time to diagnose it in Madison – and she was the only child in the Midwest to receive an OS diagnosis at that time. Doctors said that Madison was not expected to live long, and that it might not even be worth it to provide her with therapy or medical equipment.
But Deborah, Madison’s mom, refused to listen to those doctors, and searched until she found one who did have faith in Madison. And she also found us – Variety provided Madison’s first wheelchair. Now, about six years later, Madison is continuing to grow and improve.
Deborah’s tenacity did not stop there. It was recently determined through a swallow study that, due to the OS, Madison was aspirating each time she tried to eat or drink, unless she was seated in a proper position. Because of this aspiration, she often came down with pneumonia, and was hospitalized six times in this past year alone.
Doctors recommended a feeder seat for Madison to keep her supported and secure while she eats. This time, however, it was insurance that didn’t feel it was necessary.
So, Madison’s family turned to Variety again. With the help of our donors, we were able to provide this medically necessary piece of equipment – and it is even her favorite color.
With the feeder seat, Madison has been learning how to feed herself, which is a huge step towards increasing her independence. In addition to eating, she can use the chair anytime she needs or wants to sit up on her own, such as playtime.
Variety has also provided Madison with a Sleep Safe bed (also purple and pink) and a bright orange therapeutic bike. Her brother has a bike too, and they love riding bikes at the park together.
“It is such a wonderful charity,” says Deborah about Variety. “I’m always talking about it. I tell the parents at Madison’s school, and give them Variety’s number.”
If you need it, our number is 314-720-7714. You can also find more information on our durable medical equipment program here.