My nephew Kyle is a beautiful 2-year-old boy from Belvidere, New Jersey. He has a big sister Katlyn, who keeps him entertained and a baby brother Eric who will undoubtedly grow up to be his best friend.

It wasn’t until birth that doctors noticed something was wrong when Kyle struggled to breathe on his own. Unequipped for children’s trauma, Kyle required emergency transport to another hospital in New Jersey’s NICU. During Covid, he was immediately separated from his mom and dad (Kate & Eric), where he endured ten days of testing, with only his mom allowed to visit, one hour a day, behind a glass. It was soon determined that Kyle had a rare genetic disorder called PCH2, and he would require special care from all of us.

At two years old, Kyle lights up with an adorable smile when he hears mom, dad, and Katlyn. He knows grandma and grandpa, aunts, uncles and cousins and loves when daddy lifts him way up high in the air! However, with his disorder, he has a limited range of motion and lacks the flexibility to bend and sit in a typical baby seat. He requires a multifunctional high chair, stander, gate trainer, and car seat that can tilt and carry him in a safe and protected position. The car seat issue had become critical for traveling since the lap seat exception expired when he turned two years old.

These unique devices are critical to Kyle's mobility, development and quality of life, though he will grow out of them just as quickly as children grow out of their clothes. They are also costly, and as we have found with the special chair, insurance can decline to cover specialty equipment costs. After a year of fighting with the insurance company and having specialists from Children’s Hospital Of Philadelphia (CHOP) advocate for him, the insurance company has decided that the equipment is not medically necessary. This is pretty typical from what we are told, though very disappointing.

Kyle requires 24/7 care, a multifunctional chair, stander, walker, and physical therapy three times a week, and that is just the start. His mother, Kate, can no longer work and is his full-time caregiver. It is a scary job for a parent when a child has seizures, extreme fevers, a brief coma and countless trips to the emergency room. As parents of a special needs child, Eric and Kate drop everything for Kyle and sacrifice everything to make Kyle’s life the best it can be.

We ask your generosity to help us raise funds for the equipment and therapies that will continue improving Kyle’s quality of life and independence. We have a hopeful future for Kyle, but he will need all of our help to get there.