The Ojeda family from California spends their favorite days taking trips shoreside, to the ocean or the lake, to swim and play together as a family. The water is an equalizer for the Ojeda family. Nine-year-old Billy lives with Duchenne muscular dystrophy, which is increasingly impacting his muscle function and ability to keep up with his sisters, Ily and Abby Rose. Chris, Billy’s dad, says that playing in the water is Billy’s chance to move freely and focus on being a kid. He also says that watching that freedom is one of the best things ever.
Billy was diagnosed with Duchenne after years of failing to meet physical milestones. As early as his one-year wellness check, it was clear he was physically far behind other children his age. After his diagnosis, his parents, Steffi and Chris, mourned the loss of the future they had envisioned and hoped for Little Billy, but they have found joy in the activities they can still do as a family. They also made a promise to each other and to Billy to focus on Billy’s happiness and do what they could to stay ahead of Billy’s needs.
We needed to stay ahead of him. We have been trying to keep that goal and our promise to him.— Chris, Billy’s Dad
“I never wanted him to not have the freedom, dignity, or control of being able to do what he wanted to do within what is possible,” said Chris. “We needed to stay ahead of him. We have been trying to keep that goal and our promise to him.”
Without a safe, accessible vehicle, and partially due to mom Steffi’s arthritis, going anywhere without dad Chris was challenging. Chris would have to lift and transfer Billy into their old vehicle to get to and from school and other activities. To make matters even more difficult, the family either had to keep his power chair at school all week or at home all week because it is so heavy and difficult to transport.
That is where the Jett Giving Fund came into play.
The Jett Giving Fund is a Jett Foundation program that helps families impacted by Duchenne obtain vital medical and accessibility equipment. Health insurance often won’t–or simply don’t–cover all specialized medical and accessibility equipment, such as scooters, shower chairs, ramps, rotational beds, accessible vans, and other essential items needed when dealing with a progressive muscle-wasting disorder. Families raise half the funds, or more, needed for a specific item, and Jett Foundation covers the remaining costs and works with vendors to help bring families their much-needed equipment.
Chris had heard about the Jett Giving Fund program a while back, but at the time, they did not have a need for specialized equipment. As time went on, the need grew more apparent as Billy transitioned to a powerchair and they began to adapt their home.
“The van was something we realized we needed as it became harder and harder to maintain Billy’s independence and dignity while safely transporting him in his wheelchair. Going to school was especially hard; Billy always said he felt like a baby and that the process was humiliating. This van came just in time.”
With the help and support of their community, local organizations, and by spreading the word of their fundraising efforts at Billy’s school and on social media, the Ojeda family raised half the funds needed for their $70,000 accessible van. Jett Foundation covered the remaining half for the family, helping Billy and his family to receive their van amidst the global pandemic.
“The van is not just functional from point A to B, it allows Billy to fulfill his dreams. It allows him to live and be truly happy and have the best possible life he could. For us and for him, it is hope and dreams.”
While the family celebrated the arrival of their van this summer, the pandemic has put a pause on some of the fun adventures they plan to take.
“We want to drive to see national landmarks in the USA together as a family, like the Grand Canyon, where they have accessible paths,” said Chris. “Even lots of local trips, like just going to the movies will be easier. We already have been able to go out as a family to enjoy socially distanced outdoor dining. It was such a treat for everyone.”
You can help us support more families like the Ojedas. Consider a gift during this giving season to Jett Foundation’s Annual Appeal to support programs like the Jett Giving Fund and more.
Started in 2017, Jett Giving Fund has helped transform the lives of countless families across the country with over $1.5 million worth of accessible equipment thanks to the generous support of individual donors and major sponsors including Cure Dale’s Duchenne and Sarepta Therapeutics.