A gift of independence for Kegen

Green Bay, Wisc. mom Kate Gilmet has been pleading with her insurance company for four years to get a power wheelchair for her son, Kegen. The insurance company (Union Insurance Group) continues to deny the request stating that Kegen doesn't need a power wheelchair because he already has a manual wheelchair and a walker that he uses for short distances. The problem is Kegen is only 5-years-old, has cerebral palsy and cannot propel the chair himself, and he exhausts easily using a walker. A power wheelchair, while significantly more expensive than a manual, would provide Kegen with a whole new world of independence.

Meanwhile in Minneapolis, Minn., I was looking for a new home for my now 12-year-old daughter’s first power wheelchair. Lila also has cerebral palsy and received the bright pink power chair through insurance when she was just 5-years-old. When I posted in a Facebook group for people with disabilities about my intent to donate the chair, Kate responded immediately. Within hours, she was on her way to Minneapolis to pick up the chair.

It brought me so much joy to be able to gift this chair to a child who not only can use it, but a child who needs it. As Kate explained the struggle she has endured to get Kegen a chair just like the one Lila got at age 5, I became angry. Every person with a disability and every parent of a child with a disability knows the feeling of desperation when insurance or cost gets in the way of living a life more independently. The kind of desperation that makes you pack up your children and drive 8 hours to meet a stranger for a 7-year-old wheelchair.

Now that Kegen has the chair, it will need a tune-up, including a new seat and backrest molded specifically to Kegen’s body. The footrests need to be moved, and the parental control needs to be attached. These kinds of adjustments are expensive. The chair will also likely need future costly repairs as Kegen gets lots of use out of it. He seems like the kind of kid who will be barreling across his yard and chasing his brothers and friends just like Lila did. And while my husband Nate offered to paint the pink panels to a color of Kegen’s choosing, Kate said his grandfather is an automotive technician and plans are already underway to paint them purple – Vikings purple.

There are so many reasons I relate to Kate and see a young Lila in Kegen. I am compelled to help so that Kegen can be the best and most independent version of himself, and so that Kate can focus her time and energy on being a mom, not a social worker, physical therapist, attorney, etc.

Kegen was born at 33 weeks weighing just 3 pounds. He was born with spastic diplegic cerebral palsy and spent 198 days in the hospital. In October, Kegen was diagnosed with epilepsy, too.

Please consider making a monetary donation for Kegen to turn Lila’s old wheelchair into the best Vikings chair Green Bay has ever seen. Nobody should have to fight for basic medical needs, but until we see broad health insurance reform, parents like Kate and I will continue to fight.