A couple’s 120-kilometre walk to raise money for their son’s gene-therapy treatment came to an emotional conclusion in Victoria on Monday (May 25). Trailed by dozens of supporters, Stalin and Navpreet Gill arrived outside of the B.C. Legislature under cloudy skies, marking an end to a trek that began in downtown Vancouver five days ago. “We have blisters on our feet, we have cramps in our legs,” said Navpreet. “But those blisters and cramps do not hurt – they give us more strength, they give
us power because we know the final reason is hope for our child.” Over the course of the walk, Stalin and Navpreet worked to raise money needed to help pay for the creation of a personalized gene-therapy treatment for their son, three-year-old Gurmoh Gill, who has been diagnosed with a rare form of spastic paraplegia. Caused by a genetic mutation not present in either parent, children with the disease can quickly experience progressive muscle stiffness, speech problems and weakness in their legs. “Every second, his
body is making a toxic protein that is killing the nerves,” said Stalin. “Every minute, every week, every month that passes is taking his ability – he’s deteriorating.” Navpreet added the disease would eventually leave Gurmoh with no ability in his legs, before affecting his arms, speech, mental capacity and ability to eat. “Literally, everything would be taken away from him,” she said. There is currently no approved therapy for Gurmoh’s condition due to the rarity of his disease, and that’s why the parents are
working to raise $2.7 million “to initiate and accelerate the development of his gene therapy.” Navpreet said McGill University has already committed to developing a personalized treatment, and money raised will go towards that. “He’s walking, he’s doing everything, he’s going to pre-school,” said Stalin. “We want to keep it that way.” So far, a GoFundMe page has raised $1.4 million, and factoring in funding from other sources, the family is only $700,000 shy of their $2.7 million goal. Total costs will be around $6
to $8 million to develop, research and run pre-clinical and clinical trials, and the family hopes the province will help cover the rest. “We are not here to fight, we are not here to protest – we’re here to beg for help,” said Stalin. The parents explained that government dollars wouldn’t just help Gurmoh – they would benefit children of all ages affected by the disease. “When we initially came to know about Gurmoh’s diagnosis, we thought he’s the only one with this disease in
Canada,” said Navpreet. “He is not – there are more kids.” Stalin expressed a similar sentiment, adding funding for Gurmoh’s disease “is going to make an architecture to develop more genetic therapies.” The parents are set to meet with B.C. Minister of Health Josie Osborne on May 25 to discuss potential funding for Gurmoh’s treatment. “We are very confident and very hopeful that today she’s going to tell us that the B.C. Health Ministry will be able to offer … help for all his treatment,”
said Stalin. “I don’t think we will ever need to discuss any millions or any numbers anymore – that’s what we hope for.”
gene therapy, spastic paraplegia, Gurmoh Gill, Stalin Gill, Navpreet Gill, B.C. Legislature, Josie Osborne, GoFundMe, Victoria, Vancouver
Wow 120km for their kid, respect.
I don’t really get the gene therapy part like… how does walking raise money for something that rare? But still, blisters or not, that’s heartbreaking. Hope they hit the 2.7 million.
So the kid’s condition is from a mutation “not present in either parent” right… that means it’s basically their fault? Like how does that even work then? Not trying to be mean, I’m just confused. Either way praying for the little guy.
I saw this on FB and I’m tearing up. 5 days and dozens of people trailing them, that’s insane. They say no approved therapy, but isn’t there something already? Also $2.7 million sounds huge like who even has that just laying around. Hopefully university actually delivers and it doesn’t get stuck in paperwork forever.