Original Content: Lowell Sun
DRACUT — Donations from family, friends, neighbors and a foundation have given the Dinh family freedom and safety in the form of a $75,000 white van.
“The van will make the family independent and empowered,” Gabriella Costa, marketing director of the Jett Foundation, said. Except for its color and the special equipment on board, the van is like the Amazon vans making deliveries on local streets.
The van was presented to the Dinhs in late February to coincide with National Rare Disease Day on Feb. 28. The handover occurred at the Dracut American Legion hall on Broadway Road with many supporters on hand.
For Kristina Pham and Si Dinh, “The van will make sure they can focus on their family,” Costa said.
Two of their three sons have Duchenne muscular dystrophy, a progressive condition causing muscle weakness. Steven, 15, and Simon, 11, depend on power wheelchairs and medical equipment to navigate their world.
As their sons’ conditions worsened, Kristina was forced to leave her job to care for the boys. Her mother-in-law, Chuc Nguyen, helps with their care.
Steven is a freshman at Dracut High School where he is a straight-A student, his mother said. Simon attends the middle school. The youngest boy, Dennis, 3, will not develop the disease. His parents worked with fertility specialists to ensure their youngest did not have the gene that causes it.
Si Dinh is a software engineer at Glance Networks at the Wakefield office. The company produces what is called “co-browsing” solutions.
Co-workers at Glance organized several fundraisers on the family’s behalf. The Dinhs raised money independently as well. Those fundraisers brought in $35,000 and the Jett Giving Fund provided the rest.
Diagnosed during childhood, Duchenne is a progressive neuromuscular disorder that causes a loss of motor, pulmonary, and cardiac function, and premature death. It affects every 1 in 5,000 live male births and some females, according to the Jett Foundation. Duchenne has no cure. Children with Duchenne are born seemingly healthy and decline over time, usually losing their ability to walk around the age of 12 and succumbing to the disease in their early to mid-20s.
Eric Snyder, executive director of the Jett Foundation, was on hand to give the family a tour of the van and its features before formally handing ownership to them.
The Jett Foundation is based in Norwell. It was founded by Christine and Stephen McSherry in 2001 when their young son, Jett, was diagnosed with the disease.
