TORRINGTON, Conn. (WTNH)- The Kellys of Torrington are speaking out to raise awareness about a severe form of muscular dystrophy.
When they were very young, Jacob and Liam Kelly were both diagnosed with Duchenne muscular dystrophy, a rare degenerative disease. “Our whole world was shattered, turned upside down, you know?” says mother Mel Kelly.
The young men can’t walk and have limited movement. “It’s extremely challenging,” she says. “It’s a progressive illness so you’re slowly watching your children get sicker, sicker and sicker.” But she believes a drug has made a difference – increasing muscle function and quality of life. She joined a passionate group of parents who pushed to get accelerated FDA approval of Exondys 51. “It’s an incredible community to be a part of,” says Mel, of the connections she made during the journey.
17 year old Liam – who also has autism – and 21 year old Jacob have received weekly infusions for over a year. “It’s been stability for me mostly – a little bit of improvement for me,” says Jacob who believed the drug has slowed the progression of his disease. “It definitely worked for my brother very well.”
“Liam had lost the ability to hug and now he can hug us and that’s tremendous,” says Mel with emotion, as she describes the improvement in arm movement.
But some insurance companies are now eliminating coverage for non-ambulatory patients. Many families affected by Duchenne are living without the drug which is very expensive. “For sixteen years we had nothing but loss but now we’ve seen things come back that we didn’t have before, we really want to keep that,” explains the boys’ father, John. Now, the Kelly’s medicine is covered by an assistance fund but they’re worried about the future. They’ve started an online petition to bring attention to the insurance issue. So far, 44,000 people have signed it in support.
The Torrington parents say they’ll never stop fighting for their sons. “And for every boy and girl with Duchenne because their lives matter.”