Declan Hickey is your typical 14-year-old New Englander: major Boston sports fan, skilled fantasy football consultant, experienced PlayStation gamer, and expert binge-watcher of television’s finest shows. Declan is also impacted by Duchenne muscular dystrophy. Duchenne is a genetic disorder characterized by progressive muscle degeneration and weakness. There is currently no cure.
Now that Declan is in middle school and does not have an accessible van, he cannot use his power chair in school. Instead, Declan has to use a scooter which is uncomfortable and does not provide the support his body and muscles need throughout the school day.
Declan’s mom shared just how challenging life without a safe, accessible van is:
“Traveling to school, doctor’s appointments, and within the community is difficult without a van,” said Aisling. “Declan would have to use his scooter which must be dismantled while traveling. Now, with an accessible van, our family is able to travel around town, take family trips, get to doctor’s appointments, and go to school more easily, more independently, and more safely. For that, we are so grateful.”
This is a common challenge for many families impacted by Duchenne muscular dystrophy. There is a great financial burden associated with critical, life-improving pieces of equipment, like the type of van Declan and his family needed. Health insurance often won’t cover all specialized medical and accessibility equipment such as scooters, shower chairs, ramps, rotational medical beds, platform lifts, and accessible vans–items desperately needed when impacted by a progressive muscle-wasting disorder.
The Hickeys recently celebrated the arrival of their new van and shared in the joy of their newfound freedom. There to celebrate were members of the community who supported their efforts to raise half the funds needed for their accessible van. When they hit the halfway mark, Jett Foundation came in and matched each gift through the Jett Giving Fund to purchase the van from Purple Ribbon Mobility.
Since its launch in 2017, Jett Giving Fund has gifted nearly $1 million worth of equipment to families across the country thanks to the generous support of individual donors and major sponsors including Cure Dale’s Duchenne, Sarepta Therapeutics, and Rockland Trust Charitable Foundation.
You can help us keep families moving by donating to Jett’s Annual Appeal by the end of the year at: jettfoundation.org/annualappeal. To learn more about Jett Giving Fund or to become a sponsor, please visit: www.jettfoundation.org/jett-giving-fund.
