At just three years old, Gurmoh Gill is facing a disease with no cure
He has hereditary spastic paraplegia, or HSP, a rare genetic condition that causes progressive stiffness and weakness, particularly in the legs, but he can also end up losing the abilities in his arms, speech, and mental capacity
His parents say when they first heard the diagnosis, they were overwhelmed
“From that moment when you are told that there is no hope — not a single medicine you can give to your child, and your child is going to go backwards — all those milestones that you once celebrated, the first walk, their speech, they’re going to lose everything,” said Navpreet Gill, Gurmoh’s mother
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After the diagnosis, the Gills say they started contacting hospitals and different levels of government for help
In January, they reached out to Montreal’s Neuro and finally got an answer
“It was incredible; it’s hard to explain it in words,” said Gill “This hope is what gives you that power to go on, to look for the answers and to fight for your child.”
Researchers at the Neuro are now working with Gurmoh’s genetic information, looking for a way to target the mutation responsible for his disease
The goal isn’t to reverse the damage already done, but to develop treatment that could potentially slow the progression
“If we can fix the problem at thet’s the best-case scenario,” said Ziv Gan-Or, director of clinical research at the Neuro. “That would be the biggest hope.”
For the Gills, being told researchers were willing to work with their son was an emotional turning point
They’ve since turned that hope into a much bigger mission
They’re travelling across Canada on what they’re calling a Journey of Hope, fundraising, raising awareness and collecting letters from others living with rare diseases. Their plan is to deliver them to the prime minister’s office, calling for more re
“You can’t have inequality in terms of who should get medicine and who shouldn’t,” said Stalin Gill, Gurmoh’s father
“Medicine should be the right of each and every Canadian.”
