The family and friends of a Surrey boy who is living with a rare neurodegenerative disorder arrived at the B.C. legislature in Victoria on Monday morning after walking 120 km from Downtown Vancouver.
Navpreet and Stalin Gill told Global News in April that they began to notice their now three-year-old son, Gurmoh, having mobility issues around age one.
It wasn’t until he was about three that Gurmoh was diagnosed with Spastic Paraplegia Type 4, which causes stiffness and weakness in the legs.
Their five-year-old daughter does not have the condition and Gurmoh is believed to be the only case in Canada.
A team of researchers at McGill University in Montreal has agreed to help treat this condition, as they have treated a similar condition, and to develop gene therapy.
But the cost is anticipated to be around $8 million.
The family decided to do the walk to raise money and awareness and to get the attention of B.C. Health Minister Josie Osborne.
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“The reason we chose to walk, it’s not easy,” Navpreet said on Monday.
“Walking from Canada Place Vancouver all the way to Victoria is not easy. We have blisters on our feet. We have cramps in our legs. But those blisters and cramps do not hurt. They give us more strength, they give us more power, because we know the final reason is the hope for our child, treatment for our child.”
Osborne said she has no news to deliver at this point.
“These are experimental therapies and again, I think we all wish that things could be in existence today and there is remarkable research that’s taking place. We’re on the cutting edge of all kinds of scientific advancement. We’re seeing that in rare diseases around the world,” she said.
“But in this case, we all want to do everything we can as quickly as possible, and we’ve got to follow through with these steps, which is why we’re doing the work to understand it.”
Osborne met with the Gill family on Monday afternoon.
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