A 15-year-old boy in New Market with a neuromuscular disorder received a wheelchair accessible van last week through the support of family, community and a nonprofit dedicated to assisting those with the condition.
When he was 2 years old, Pranav Kumaresan was diagnosed with Duchenne muscular dystrophy — a progressive neuromuscular disorder that leads to muscle degeneration and weakness, according to the Muscular Dystrophy Association.
As his muscles have weakened over time, Kumaresan has used a wheelchair full time for the last two years, his father, Kumaresan Annamalai, said.
“[The van] helps me get more independence,” the 15-year-old said. “It helps me go to school or other things with this chair, and it helps me get more mobility.”
Without an accessible vehicle, transportation was difficult for the family, who has a Mazda 5.
“I was using my personal car that is not accessible, so it’s hard for him to get into the car and get out of the car,” Annamalai said. “Now, he’s happy.”
The family received the van, a Toyota Sienna, through the Accessible Vehicle Fund program at the Jett Foundation — an organization that provides programs, education and assistance funding for individuals and families impacted by the disease.
Through the program, the Jett Foundation, which is based in Massachusetts, works with families to help them raise at least half of the funds needed for the vehicle. The foundation then covers the remaining costs and coordinates the purchase and delivery of the vehicle.
The family has applied to the fund in previous years, but was not accepted until this past cycle. Application decisions are made by a committee that considers many factors, including the “immediate need” for a vehicle, according to the foundation website.
It took five months for the family to raise about $35,000 with help from family, friends, the teen’s school and the larger community, Annamalai said.
The foundation also provided $35,000 to cover the remaining cost of the vehicle.
Jessica Campbell, a social worker at the Jett Foundation, worked with Kumaresan’s family throughout the process.
The foundation provides ideas for how to raise funds, ways to share their story with the community and flyers to support their efforts, Campbell said. They also do routine check-ins and work to connect families with others who have already been through the process.
“Receiving a diagnosis of Duchenne is devastating,” Campbell said. “There’s a lot of navigating what your life is going to look like from this point forward, and then this program gives people the opportunity to connect within their communities, to share their story.”
This fall, Kumaresan will begin 10th grade at Linganore High School. He said he feels supported at school by teachers and others who ensure he can move around the building with his power wheelchair.
The high school staff members have also provided the family with information about helpful resources for assistance, according to Annamalai.
Outside of school, Kumaresan enjoys watching sports on TV, especially baseball.
On Wednesday, Kumaresan, his parents and his 9-year-old sister, Thivyasri Kumaresan, blasted confetti cannons as they stood in front of the new white van with a giant red bow laying on the hood.
“We are not alone,” Annamalai said. “A lot of people are there to support us.”