B.C. Family Races Against Time for Son's Gene Therapy Treatment

The family of four-year-old Clyde Jackson is engaged in a desperate race against time to secure life-extending gene therapy treatment for their son, who suffers from metachromatic leukodystrophy (MLD). MLD is an extremely rare genetic disease that attacks the nervous system. Just weeks ago, Clyde was a vibrant child, enjoying music and playfully stealing spicy noodles, described by his mother, Jamie Lee Jackson, as "always happy" and "always dancing."

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He’s always happy, he’s always dancing and listening to music.

After noticing Clyde stumbling and struggling with stairs, his family received the devastating diagnosis. While there is no cure for MLD, early diagnosis allows for gene therapy to potentially slow or halt its progression before irreversible damage occurs. Clyde currently meets the medical criteria for treatment in Milan, Italy, but his family emphasizes that the opportunity hinges on the speed of the approval process. "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," Jackson stated.

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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.

"Every day matters," Jackson stressed, explaining that patients must maintain strict mobility and cognitive requirements to qualify. The longer the process takes, the greater the risk that Clyde may no longer meet these crucial criteria. As a mother, she finds the wait agonizing, "because I'm watching him struggle." The family also aims to use Clyde's situation to raise public awareness about MLD, as it is not currently included in Canada's universal newborn screening program. "That's why it's so important it gets caught early," Jackson added. While awaiting news on his treatment approval, the family has launched a GoFundMe campaign to help cover potential travel and care expenses, or to support Clyde's ongoing care if he is not approved for the therapy.

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It’s a race against time. Every day matters.