Nine-year-old Katie loves horseback riding, skiing, dancing and soaking in the hot tub — quite a diverse list of activities for a little girl with a fragile medical condition.
Meredith delivered Katie at 37 weeks with no complications. For the first few months, Katie was a healthy baby. However, at four months old, she began having seizures and was soon diagnosed with epilepsy. Several months later, she was diagnosed with mitochondrial disease, a progressive and incurable condition, and global developmental delay. As a result, Katie is not able to bear any weight, is non-verbal and has a fragile immune system.
“Initially we were sad and concerned for what it would mean for our future, but that didn’t last long,” said Meredith, Katie’s mom. “Dan and I decided we would embrace every moment with Katie and try to provide everything she could want.”
Katie requires a multitude of mobility and accessibility equipment including a tilt wheelchair, a stander, an adapted tricycle, a shower commode and a bath chair. She also uses a tablet and an eye-gaze communication device. Easter Seals helped to fund two bath chairs, a stander, a van lift, and a ramp as well as her life-changing device.
“Although she can’t talk, Katie understands everything. At age two, she started using an eye gaze communication device which truly opened up the world for her,” continued Meredith.
The communication device has also enabled Katie to participate in her community school where she can socialize with other kids in school for a few months and work with a teacher in their home during the winter. “It’s important to us that Katie has the opportunity to participate in school and other social activities when she can and her communication device has made that so much easier.
As a single income family, we have many expenses. It’s a breath of fresh air to know that her equipment is something we don’t have to pay for and that when we ask Easter Seals for help, they are there. Thank you for taking some of the weight off of families’ shoulders.”