Oh the places she’ll go

The short version is Gracie needs a different wheelchair to live life to her fullest. The wheelchair (with power assisted wheels) will allow her to conserve energy and do more. Gracie has seen other children utilize similar chairs and been brought to tears, not because she’s jealous, but because she wants that kind of independence, too. The chair she needs was prescribed for Gracie in April but insurance has been denying it since. There is nothing ok about having to crowdfund a piece of equipment a doctor ordered for a patient because insurance thinks they know better, but crowd funding beats the alternative of our girl going without while insurance plays their games.

Gracie was born healthy and developed typically until she was 10. Then, antibodies that should have fought a strep infection attacked her brain. For nearly a year she fought two battles. One being the rare disease that turned her world upside down, and the other a fight to name and treat it. The strain that put on her body was intensified by an underlying mitochondrial disorder that prevented her body from making enough energy to work. Doctors describe the culmination of these factors as a “perfect storm,” and the end result for her was frequent seizures, muscles wasting and a digestive track that couldn’t turn food to energy. In 2019 Gracie got her first wheelchair. At that time she was less than 60 pounds. As more has become understood about her condition and appropriate measures, such as a feeding tube and therapies have been ordered to treat it – she’s grown! Today she is nearly twice the size she was then, resulting in her current chair being too small. But, size is not the only factor making it a poor fit. When the chair was ordered her mitochondrial disorder was still undiagnosed. At the time nobody knew her muscles would continue to weaken, or that her energy levels would continue to decrease. The modifications that can help today weren’t known to be needed then.

This past spring Gracie was fitted for a new wheelchair. One that will fit her properly, have a harness to hold her upright when her muscles can’t and power assisted wheels to give her the independence to move about without robbing her of energy. But insurance is denying it. They’ve denied it because 1) they only approve one every five years, 2)she can complete activities of daily living (ADL) with a manual one and 3) they insist her other insurance [a state grant that is a payer of last resort] should cover it first. This is absurd! It’s absurd because she’s grown significantly, because completing a single ADL without it would leave her without energy to do anything else, and because why allow doctors to prescribe things if insurance gets to decide what’s needed?

For months I’ve navigated the appeal process, to no avail. And as the weather changes, sapping Gracie of energy even more, I feel like I am working against a clock. And while I will continue to fight for coverage, today I am asking for help to purchase this chair and give her the quality of life she deserves.

If insurance comes through and covers the chair, the funds will be saved for another service dog (years down the road) when Auggie, her current one is ready to retire.

“We is greater than me,” and we’re thankful for the community whose love & support surround her.