Fundraising for an Accessible Van
The Hewitt family of Egg Harbor Township, New Jersey is navigating a journey they never imagined to be real: having a 9-year-old son diagnosed with Duchenne muscular dystrophy, a progressive neuromuscular disorder causing a loss of motor, pulmonary, and cardiac function. When Killian Bauer was diagnosed with Duchenne muscular dystrophy, the diagnosis brought a wave of challenges for the Hewitt family, especially for his mother, Amanda Hewitt-Shiley, who is his primary caregiver. Killian has a twin brother, Keegan (who is not diagnosed with DMD), three other siblings, and also lives with his five dogs and grandparents, making for a bustling household.
Killian loves Disney, legos, Donald Duck, and playing with the dogs. He also loves to play with his brothers and tries to participate in activities they enjoy. As Killian’s condition progressed, he lost the ability to walk and now relies on a power wheelchair full-time. The family’s daily routines revolve around managing Killian’s medical needs and finding ways to participate in family life, despite the physical limitations imposed by Duchenne.
Killian’s power wheelchair, weighing a substantial 441 pounds, presents a significant transportation hurdle. While his school provides an accessible bus, the lack of a personal accessible vehicle severely limits his mobility outside of school hours. This means simple pleasures like trips to the zoo or local parks, which Killian dearly loves, are often out of reach. He’s also unable to participate in after-school activities with his siblings as the school bus isn’t available outside of regular hours, preventing him from joining in the fun.
As a single mom, Amanda faces the immense physical strain of transferring Killian, who now weighs 138 pounds, in and out of their non-accessible van. This has led to cancelled medical appointments and a drastic reduction in Killian’s ability to participate in community events. Despite having a Hoyer lift, a pulmonary jiggle vest, and a sit-to-stand stander to help with his care, the challenge of transporting Killian is overwhelming.
The need for an accessible vehicle is critical for the Hewitt family, not only to ensure Killian receives timely medical care, but to allow him to fully engage in life and enjoy the simple joys of childhood.
In Amanda’s own words, “At times I need to cancel his medical appointments because I just can’t get him into the van. We really need a wheelchair accessible van so Killian can attend all appointments in a timely manner and leave the house more to have fun and do local activities in the community. A van would change our lives drastically.”
Thankfully, through attending an advocacy conference in the Duchenne community, the Hewitt family found Jett Foundation’s Jett Giving Fund program where they will aim to raise half or more of the necessary funds for their new accessible vehicle before Jett Foundation covers the remaining expenses and purchases the vehicle outright. The future now holds the promise of family outings and accessible transportation for them.
The Hewitt family has met their fundraising goal and received accessible transportation thanks to supporters like you! You can still support our program and future program participants with a gift to Jett Foundation today:
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All donations to Jett Foundation are tax-deductible to the extent allowed under applicable law and is an unrestricted contribution to the Jett Giving Fund. The family is working to raise half the funds needed for their van or more; when they reach their goal, Jett Foundation will cover the remaining costs and coordinate purchase and delivery of the vehicle.
