“The biggest challenge has been the social and emotional side of the limitations to getting Alex out of the house,” says Lianette, a mother whose family is impacted by Duchenne muscular dystrophy. Her youngest son, Alex (15), was diagnosed with Duchenne when he was 5-years-old.
The Casals family of five (which includes their dog, Rollo) enjoys watching sports together, going out to dinner, and exploring outdoor activities. Alex most appreciates getting together with his family wherever and whenever. But the Casals family has faced more challenges each year as Alex becomes less ambulatory and his parents can no longer physically transfer him to leave the house. “We have injured our backs, knees, necks, and arms on different occasions,” says Lianette. “More importantly, we don’t want to injure Alex while getting him out of the car, which unfortunately has happened multiple times.”
Alex also has osteopenia, which makes his bones more prone to damage.
The family applied to Jett Foundation’s Accessible Vehicle Fund due to the recent increase of injury as well as the major financial barrier that obtaining these vehicles brings. “This means a lot to us since the conversion to make a vehicle accessible is very expensive, and we have to make other adaptations to our house as well,” says Lianette.
On Monday, November 21, Jett Foundation presented the Casals family with their new, safe and accessible vehicle. Along with nine other families who are participants in our 2022 Accessible Vehicle Fund, Alex and his family fundraised more than half the funds needed for their vehicle with help from their community before Jett Foundation stepped in to provide the remaining funds and make the purchase.
Jett Foundation’s Jett Giving Fund offers families financial assistance through two main branches of support: The Accessible Vehicle Fund helps families obtain safe, accessible transportation; families raise half the funds needed or more for their vehicle and Jett Foundation covers the remaining costs. The Emergency Fund provides grants to families facing unexpected, emergency situations.
Lianette says, “Receiving this van has made a huge, positive impact on our lives as a family and on each of us as individuals. We are not only avoiding injuries now with safe transportation, but Alex has gained freedom to get out of the house whenever he wants. Sadly, there were times when he wanted to go out, but he couldn’t because no one could get him in the car at that time.”
Alex was joined by his entire family in Miami, FL to receive their new vehicle, as well as a team member from Jett Foundation to help celebrate.
Susanna Doyle, one of Jett Foundation’s newest employees, says, “I couldn’t think of a better way to start my time here at Jett Foundation than experiencing a mission moment in Miami with the Casals family. It was incredible to watch Alex get into the van with his family, and I am so glad I was able to share their joy with them.”
Lianette shared, “Seeing the ramp open and our son getting inside the car so easily was a dream come true. We now feel accomplished, happy, and safe.”
Lianette also shared advice and guidance for families in the Duchenne community: “There are wonderful programs that can help us like Jett Foundation’s Accessible Vehicle Fund, and you should apply for assistance if possible. Jett has exceptional programs to help our Duchenne community and the staff is professional, kind, and patient with families. Julie did an amazing job coaching me and providing support and guidance through the whole fundraising process. Thank you everyone who made this possible!”
The Jett Giving Fund Program would not be possible without our dedicated partners in the community such as Cure Dale’s Duchenne. Rick and Lelia Ginder have helped fund our Jett Giving Fund program in honor of their son, Dale, since 2018. Their strength and support has enabled Jett Foundation to grow and thrive in many ways. “We are proud to support the Jett Giving Fund each year because we know that boys and families with Duchenne are limited in what they can do. Jett Foundation helps restore some of their freedom and independence,” says the Ginder family.
Established in 2017, the Jett Giving Fund has helped transform the lives of countless families across the country with over $3.5 million worth of accessible equipment and emergency assistance thanks to the generous support of individual donors, local communities, and major sponsors including Cure Dale’s Duchenne, Fibrogen, the Flatley Foundation, the Killian Family, Michael’s Cause, Ryan’s Quest, and Sarepta Therapeutics.
You can help us to support more families through the two branches of Jett Giving Fund: the Accessible Vehicle Fund and the Emergency Fund. Donate today or learn more about becoming a sponsor by emailing email@example.com.
If you or someone you know is in need of support or would like more information on our Jett Giving Fund, please visit https://www.jettfoundation.org/giving-fund/.