Keeping Two Sons with Duchenne Safe, Included, and on the Move
Every trip the Rhodes family takes outside the home requires strength, precision, and courage, because safety is never guaranteed.
Two of Lisa and Wes Rhodes’ sons are living with Duchenne muscular dystrophy, a progressive neuromuscular disorder causing a lack of motor, pulmonary, and cardiac function. As Duchenne progresses, everyday tasks such as simply getting into a vehicle become increasingly complex and physically demanding for both children and caregivers.
Their oldest son, Layne, was diagnosed in 2014 and now relies on a power wheelchair full time. His younger brother, Maverick, was diagnosed in 2021 and already uses mobility equipment to help navigate his days. Living in rural Nebraska, the family must regularly travel long distances to access specialized Duchenne care out of state.
Every outing requires carefully maneuvering two mobility devices into the vehicle and physically lifting Layne into a seat so he can be buckled safely. His wheelchair must then be ratcheted down inside the van, and the ramp loaded again.
This process takes a long time just to load and unload. More importantly, it is not safe.
The boys’ parents risk injury every time they lift them, an especially serious concern with five children depending on them and a recent surgery that temporarily restricted lifting. Winters bring additional danger, with ice, cold, and slippery conditions compounding the risk.
Beyond the physical strain, the emotional impact is growing.
Layne has developed increased anxiety around transfers, afraid he may fall or be hurt. As a result, he has become less willing to leave the house or participate in activities he loves like helping with school football as a student manager or volunteering to keep score at local baseball games. For a child who loves sports and community involvement, this loss of independence is heartbreaking.
An accessible vehicle would change everything.
With a fully converted, wheelchair-accessible van, both Layne and Maverick could travel safely without risky transfers. It would protect the health of their caregivers, reduce travel time, ease anxiety, and allow the Rhodes family to participate more fully in their community.
Through Jett Foundation’s Accessible Vehicle Fund, the Rhodes family is working to raise half or more of the cost of a safe, accessible vehicle. Once their goal is reached, Jett Foundation will help cover the remaining cost and coordinate a solution that meets their family’s long-term needs.
Your support helps keep two brothers with Duchenne safe, supported, and connected, so their family can focus on living, not lifting.
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.
