“As our boys keep growing, we run into more barriers for transporting our family in a safe manner. Having two boys with Duchenne is incredibly difficult,” says Ember Thomas, the mother of two boys who have Duchenne muscular dystrophy.
The Spencer family consists of Ember, her husband, their oldest son Maverick (16), Ruger (12), Wyatt (10), their dog Sweetie, and two cats. Ember says, “Ruger and Wyatt are relying more and more on their wheelchairs and physical assistance from us as their bodies continue to weaken.”
Wyatt, the youngest of the Spencer boys, has experienced a recent increase to his size, making travel and attendance at appointments very difficult. Ember can no longer carry him alone, and constantly relying on others to help is not safe. Ruger, the oldest, is relying entirely on his chair to move around. Long distance traveling and getting into cars brought major disruptions to the family’s days.
Ember has been attending Porch Nites with fellow moms, which is where she feels her family receives the most guidance and support for Duchenne challenges. After connecting with the community through many events, Ember found her way to Jett Foundation’s Accessible Vehicle Fund: “I saw how rapidly my boys’ bodies were growing and weakening at the same time which caused me to apply,” says Ember.
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.
“Our vehicles were not suitable for our family to travel in recent years,” explained Ember. “My whole family was very excited on the day that our new accessible van arrived. I no longer have to ask people for help and the boys can help themselves.” The Spencer family is excited to return to doing all of their favorite things together again, including auto and dirt track racing events, fishing, and exploring the world.
Jett Foundation relies on the generosity and support of our community and partners such as Michael’s Cause, a nonprofit contributing toward the fight against Duchenne through many community fundraisers and events. Robert Capolongo, founder, says “On behalf of Michael’s Cause we are happy to have a small part in helping the Spencer family with the accessible van. It is our goal to fund research and help families in any way we can. God Bless the Spencer family and thank you to the Jett Foundation for all that you do.”
In addition to smooth transportation in their new van, what the Spencer boys are excited about is very simple: being able to see out of the van windows and take in the world around them. Ember tells other Duchenne families to “Live every day to the fullest and don’t be afraid to ask for help.”
Established in 2017, Jett Giving Fund has helped transform the lives of countless families across the country with over $2.5 million worth of accessible equipment and emergency assistance thanks to the generous support of individual donors, local communities, and major sponsors including our angel sponsor Cure Dale’s Duchenne along with additional partners Sarepta Therapeutics, FibroGen, the Flatley Foundation, and the Killian Family.
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 protected].
