“Nikko Roadster” is what Domenic Webb plans to name his new accessible van. Domenic is a 24-year-old young man from California, whose journey with Duchenne began in preschool.
Seeing Domenic gradually lose his strength and mobility overtime, Domenic’s mom, Shirley, says, “There is no worse feeling in the world than knowing that your child has a need that you can’t provide.”
Pre-planning and organizing how to get to appointments became stressful for the Webbs, on top of the anxiety and fear of what appointment outcomes would be. To get to appointments, the Webb family often rented a van when it was in the budget and used public transportation when it wasn’t. That is when Shirley turned to Jett Foundation.
“There were times that it was so disheartening when we were unable to make it to important appointments due to transportation issues,” says Shirley. “Now that we have this accessible van, we can see the pride and sense of security it has already given Nikko (Domenic).”
Shirley first became aware of Jett Foundation’s Jett Giving Fund program after joining a support group for moms in the Duchenne community where she saw a post from Duchenne super mom and Community Ambassador, Jessica Campbell.
Jett Foundation’s Jett Giving Fund offers families financial assistance through two main branches of support: the Accessible Vehicle Fund and the Emergency Fund. 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.
As part of the Accessible Vehicle Fund program, the Webb family plugged away at fundraising half the costs of their accessible van with support from family, friends, and their community. Due to the pandemic, many of the fundraisers the Webb family had planned did not pan out. The Webb family was introduced to Joaquin’s Warriors DMD who generously helped them cross the fundraising finish line.
Joaquin’s Warriors DMD is a Duchenne family foundation and non-profit whose goal is to raise money to fund research to find a cure for Duchenne muscular dystrophy. They had heard about the Jett Giving Fund and were excited to support a local family in need.
“Helping the Webb family purchase their accessible van was important to us,” says Joaquin’s Warriors DMD Founder, Sara Aluffi. “They have already been through so much. Now they can concentrate on all the other myriad of things that Duchenne families have to deal with on a regular basis. In the meantime we have gained friends for life. It’s a win-win.”
The Webbs are excited to finally enjoy the opportunity to venture outside the house, thanks to their new set of wheels. The first stop on Domenic’s list is Polar Playground in Huntington Beach. Domenic is also excited to check out the new Star Wars area at Disneyland and he can’t wait to make his very own light-saber! He can’t wait to try out new restaurants and their local drive-in movie theater.
“We have so many things we want to do–from big things to even just a drive to a nice picnic location,” says Shirley.
Shirley says she is so grateful for the support, especially from other Duchenne moms. If Shirley could give one piece of advice to those looking to apply for any assistance it would be: always remember the bigger picture.
“It took a little humility as someone that doesn’t like to ask for help. I had to remember the big picture. This was not about me but for Nikko (Domenic) and his needs and well-being. You never know someone’s heart and what they may be willing to do unless you share your story!”
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].
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, the Killian Family, and Joaquin’s Warriors DMD.
