Special Delivery: Jett Foundation Helps Jacobus Family Receive Safe and Accessible Van

February 28, 2023

Carlito Jacobus (14) is diagnosed with Duchenne muscular dystrophy and lives in Roanoke, Virginia with four family members. He is the youngest of four children and is cared for by his mother, Darnita. As a family, they  enjoy engaging with their community through church, food, and shopping.

Carlito was diagnosed with Duchenne at just three years old, but has not let it slow him down. Darnita has been his greatest supporter through challenges of attending school, participating in activities, getting to medical appointments, and traveling on a regular basis.

“Our biggest challenge was transporting the family as a whole or telling people we can’t attend things because I couldn’t take Carlito,” says Darnita. “Carlito’s body used to hurt when we did transfers by picking him up. We even stopped going to church before we received Carlito’s new chair and van.”

On February 22, 2023, Jett Foundation delivered new wheels to the Jacobus Family, who are participants in the Accessible Vehicle Fund branch of the Jett Giving Fund. Joined by his closest family and friends, Carlito received a magical celebration for a day that symbolizes greater independence and freedom for he and his family. “This is LIT!” is how Carlito expressed his emotion while rolling into his new accessible van.

Darnita says, “Driving the van for the first time was very emotional as I haven’t had all of my kids in the same car, comfortably, for some time now.”

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.

Jett Foundation’s Camp Promise Operations Director, Niki Benfield, joined the Jacobus Family for their celebration. She says, “The honor of being a part of this special event, and the privilege of sharing it with such a deserving family, was unforgettable. When Carlito enters a room, his infectious smile and positive attitude creates joy for all who are around him! Throughout the celebration, I heard the word “freedom” used numerous times, and I believe that sums up what Jett Giving Fund aims to accomplish.”

As for other families in the Duchenne community, Darnita shares: “Don’t give up! We didn’t think this was possible at first, but we pushed for it. Jett Foundation is there for you every step of the way, and I loved being able to learn and grow as a person through this program.”

The Jett Giving Fund program would not be possible without our dedicated partners in the community such as Sarepta Therapeutics, a global biotechnology company on an urgent mission to engineer precision genetic medicine for those affected by rare disease. “Our connections with the community run deep, and we understand that while we advance research and therapies, families need support today. We’re proud to support the Jett Giving Fund and thrilled to see the positive impact it has on families like Carlito’s,” says Siobhan Fitzgerald, executive director, Patient Affairs.

Established in 2017, Jett Giving Fund has helped transform the lives of countless families across the country with over $3.5 million worth of accessible equipment and emergency assistance thanks to the generous support of individual donors, local communities, and major sponsors including Cure Dale’s Duchenne, Fibrogen, the Flatley Foundation, the Killian Family, Michael’s Cause, Ryan’s Quest, and Sarepta Therapeutics.

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].

If you or someone you know is in need of support or would like more information on our Jett Giving Fund, please visit https://www.jettfoundation.org/giving-fund/.

Experience the magic this summer!

How is the rare disease community accomplishing goals?

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.

Accessible Vehicle Fund Applications Open