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 the source, fix the DNA, fix the mutation that causes the disease, that’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 resources for families like theirs.
“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.”
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