Me, My Van, and Duchenne: A Guest Blog by Declan Hickey

May 30, 2023

My name is Declan Hickey. I’m almost 18-years-old, diagnosed with Duchenne muscular dystrophy, and live in Kingston, Massachusetts with four family members. As a family we like to go out to eat, travel together, and watch movies at home or at the theater. I’m also a recent high school graduate, and I’ve really enjoyed my time as a student, but have gone through all the hardships and obstacles of school itself. My life has been heavily impacted in a positive light due to acquiring an accessible van through Jett Foundation’s Accessible Vehicle Fund branch of the Jett Giving Fund.

An accessible vehicle gives you easy access to go wherever you want, whenever you want. The commodity of a vehicle to transport yourself is important for all people, but can be difficult to manage while having muscular dystrophy. Before we received our van, we used a mobility scooter and lifted it into the car each time I would go to school, go out with friends doing a numerous amount of things, or go out with my family. Doing that EVERY time had put a very heavy strain on my parents both physically and mentally. Accessible vehicles are also very costly.

Luckily, we were able to utilize what Jett Foundation generously offers to those accepted into the Accessible Vehicle Fund. Jett Foundation was our savior because the Accessible Vehicle Fund was able to financially cover what we needed in order to purchase a van.

Now that I have my van, I have been able to safely get to school, medical appointments, and comfortably travel with my family. We have been able to go on fun vacations, such as the time we visited Vermont to see my aunt. It was great to have a three-hour drive that now seemed so easy in our new van. We drove to Stow, Burlington, and neighboring towns with zero stress of our vehicle not accommodating us.

I was also able to go on a vacation to New Hampshire to a ski resort with the help of our new van, Jett Foundation, and JB’s Keys. Going skiing as someone who has muscular dystrophy was very cool and is something I never imagined I could do until we got our van. I even remember ordering room service and watching the Patriots playoff game that night after a long day on the slopes. These are times I will cherish forever.

These great experiences would have never been possible without my accessible van. I feel really thankful that I have been granted these experiences.

The Accessible Vehicle Fund can tremendously change your life for the better, as it has mine. I have gained much more freedom now that I can travel safely with my power wheelchair. That freedom can be as simple as attending doctors appointments, doing volunteer work, going to the local park, or visiting various sports stadiums like Fenway Park, Gillette Stadium, or TD Garden in my area. This program greatly benefits families in the Duchenne community by allowing them to participate in things they could not before. You can’t go wrong by applying to the Jett Giving Fund because it will only make your world bigger and brighter while broadening your connections at the same time.

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Tune in on February 29 to hear from our panel and moderators on how they are accomplishing goals and living life to the fullest!

Your gift helps Jett Foundation provide programming and opportunities, such as Camp Promise, to many families impacted by Duchenne muscular dystrophy each year.

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