Kelly Fitzpatrick says her life changed when she learned that not one, but all three of her sons have Duchenne muscular dystrophy. Connor (11), Kian (9), and Finnegan McVey (7) are three brothers from Poynette, WI, finding joy in spending each day with one another and their mother who tackles every Duchenne obstacle as a single parent.
Prior to Connor’s diagnosis, Duchenne muscular dystrophy was not something the family had ever heard of. Connor, the oldest, is growing quickly and transitioning into a wheelchair full-time. He is still ambulatory but has lost a lot of mobility in his ankles since physical therapy ended abruptly due to the COVID-19 pandemic. Like the rest of the McVey boys, Connor strives for a sense of normalcy.
One of the greatest challenges for the McVey boys has been attending clinics and hospitals for visits. Without transportation for his power wheelchair, Connor had to use wheelchairs built for adults at the hospital, causing him to be uncomfortable.
Kelly applied to Jett Foundation’s Accessible Vehicle Fund through encouragement from fellow Duchenne moms at a Porch Nite event. “When I shared my story, I thought I was just explaining my situation like many others. The other moms at Porch Nite pushed me to apply for assistance because of the needs my boys will have in the near future,” says Kelly.
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.
Kelly says “It has been life changing to receive this van. Not only are we now set up to have the boys travel properly, but I’ve never had a vehicle this safe before. When we finally picked it up, everything felt surreal and I still can’t believe it is ours. Many people find Duchenne takes away independence, but this van and proper equipment gives more independence to my boys.”
The family enjoys going to the zoo, the beach, getting ice cream, and exploring new places. “Some trips have felt like an olympic event,” Kelly says, “but now, with the van, I have time to show them the world without tiring myself out.”
“When I finally had the courage to ask for help, I was blessed to be accepted into this amazing program with Jett Foundation. I am grateful for the people that have donated and shared our story… I couldn’t do this without every one of you!” says Kelly.
Jett Giving Fund is made possible by partnering with other organizations like Kindness Over Muscular Dystrophy (KOMD), an organization that provides support toward research and assistance for those with muscular dystrophy. Chris Curran, founder of KOMD, says “Jett Foundation’s mission of extending and enriching the lives of Duchenne patients calls to our hearts. Living a life with Duchenne is a tough road and at Kindness Over Muscular Dystrophy, we are committed to making that road a little easier to travel. We were especially touched by the McVey family story of determination when faced with 3 boys diagnosed with Duchenne. We want the McVey’s to know that we stand by them and hold them dear in our hearts and prayers.”
For other families impacted by Duchenne, Kelly says: “Don’t be afraid to ask for help. We never know when our lives will change, and it is always good to be prepared rather than stranded. I have learned that regardless of your setbacks or timeline, it is not selfish to ask for help. Be as creative and adaptive as you can with Duchenne!”
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].
