Congratulations to 14-year-old Keegan and his family in Kyle, TX, on receiving an accessible van through our Jett Giving Fund! Keegan lives with his mom, Tess, his seven-year-old sister, Aurora, and their two cats. Together they love going to the beach, traveling, and going to renaissance festivals together. Keegan lives with Duchenne muscular dystrophy, which makes these fun family activities–as well as daily activities like getting to school and doctor’s appointments–more difficult to navigate without safe, reliable transportation.
Before access to their new piece of equipment, the Moore family used a trailer to navigate around. “It was back-breaking. It wasn’t an accessible trailer either,” says Tess. When using the trailer, there were many things the family relied on: parking, weather conditions, and physical effort to lift Keegan’s wheelchair in and out of the trailer. Tess mentions that the new van cuts their driving time in half; they don’t have to give themselves an extra 15 minutes just to get in the vehicle for doctors appointments or any other of their favorite activities.
One of the main reasons that the Moore family applied to the Jett Giving Fund is the expense of accessible vehicles. Jett Giving Fund’s Accessible Vehicle Fund is a financial assistance program of Jett Foundation where families raise half the funds needed or more for their equipment, and the foundation covers the remaining half of the costs for families in the program.
The Moore family had previously tried to raise funds for a van, but were unsuccessful . “Accessible vehicles aren’t accessible to those who need them. Vans start close to $60,000, unless used,” says Tess. The price tag for the van they needed totaled nearly $76,000.
After the family was accepted into Jett Foundation’s program, they started working toward their portion of the van’s cost, but once COVID hit, their fundraising efforts halted.
That is when another nonprofit dedicated to funding Duchenne research and programs stepped in to help the Moore family meet their goal. The organization, Michael’s Cause, was founded by parents Rob and Theresa Capolongo in honor of their son Michael who has Duchenne.
“On behalf of our family and our charity, Michael’s Cause, we’re really happy to be able to help,” says Rob Capolongo, founder of Michael’s Cause. “We’re thankful that we’re in the position to be able to help in a small way, to make life a little easier for another family. We know what you’re going through. We’re in this together.”
When the Moore family finally received their new van, the family hopped in the van in their pajamas to take a short drive to their local ice cream stand and enjoyed a sweet treat to celebrate!
As the country and world open back up post-pandemic, the Moore family already has a few adventures planned. They already took their new van to the Grand Canyon, which is something they have wanted to do for a long time. They are also planning to go visit family in Colorado, and go to some parks that have rentals for off-road wheelchairs! Some other things they hope to do are see monuments on the East Coast, go to the Minecraft convention, visit his dad, Jason, in Houston, and more!
Tess says her advice to those in the Duchenne community is to live in the present.
“Take it day by day. So many moms get years ahead. If you focus on what’s at the end, you’ll miss the now.” She continues, “You can’t let the fear of what will happen with your child get in the way because you will miss out with your child.”
You can help us to support more families through the Jett Giving Fund. Donate today or learn more about becoming a sponsor by emailing maura@jettfoundation.org.
Established in 2017, Jett Giving Fund has helped transform the lives of countless families across the country with over $1.8 million worth of accessible equipment and emergency assistance thanks to the generous support of individual donors, local communities, and major sponsors including Michael’s Cause, Cure Dale’s Duchenne, Sarepta Therapeutics, FibroGen, Kindness Over MD, the Flatley Foundation, and Ryan’s Hope.
