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Just weeks ago, four-year-old Clyde Jackson was doing what he loved most: listening to music, singing along to The Nightmare Before Christmas and stealing spicy noodles from his family’s plates.
“He’s always happy, he’s always dancing and listening to music,” said his mother, Jamie Lee Jackson. “I always have seen him growing up as some sort of musician.”
After his family noticed Clyde was stumbling and could no longer use the stairs on his own, he was diagnosed with metachromatic leukodystrophy (MLD), a rare genetic disease that attacks the nervous system.
There is no cure for MLD. But if it’s diagnosed early enough, gene therapy can slow or halt further progression before more irreversible damage occurs.
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Clyde currently meets the medical criteria to receive gene therapy in Milan, Italy. But his family says that opportunity depends on how quickly the approval process moves.
“As of right now, he meets the standards and qualifications to get the gene therapy,” Jackson said. “It’s just a matter of how quick he gets there, how quick the doctors put him in the schedule and how his progression will look by the time we can do it.
“It’s a race against time. Every day matters.”
Patients must continue to meet strict mobility and cognitive requirements to qualify for the treatment. The longer the process takes, the greater the risk those requirements may no longer be met.
“As a mom, it doesn’t feel fast enough because I’m watching him struggle,” Jackson said.
The family also hopes Clyde’s story raises awareness about MLD, which is not currently included in Canada’s newborn screening program.
“That’s why it’s so important it gets caught early,” Jackson said.
While they wait to learn whether Clyde will be approved for treatment, the family has launched a GoFundMe to help cover expenses if they need to travel to Italy. If Clyde is not approved, the funds will help support his care as he continues to live with MLD.
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