Family of toddler with rare disease walking over 100 km to B.C. legislature to raise funds

The parents of a Surrey toddler diagnosed with a rare genetic condition are walking hundreds of kilometres to the B.C. legislature.

The parents of a Surrey child diagnosed with a rare genetic condition are walking from Vancouver to the B.C. legislature in Victoria, in the hopes of raising desperately needed funds to treat their son’s disease.

Three-year-old Gurmoh Gill has a neurodegenerative disease called spastic paraplegia-4 (SPG4), which is causing him to experience mobility loss.

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His mother, Navpreet Gill, said he will eventually lose the ability to walk, eat and speak.

“This is a disease which takes away everything from the child,” she said.

Gill and her husband Stalin have reached out to researchers at McGill University’s The Neuro institute, who are willing to treat their son, but it comes at a cost of up to $8 million.

To start the treatment, the family needs $2.7 million.

Through their own fundraiser, the Gills have raised $2 million.

On Thursday, the family and their supporters embarked on a journey, walking about 120 km from Vancouver, with stops in various cities, until they reach Victoria on Monday.

Stalin Gill said they’re hoping to raise the remainder of the funds this way.

“My son has the right, like any other child in this world,” he said. “He deserves that care. He deserves that love.”

Once in Victoria, the Gills will meet with Health Minister Josie Osborne.

Osborne said the provincial government is committed to working with clinicians, researchers and the life-sciences sector to explore opportunities to strengthen cutting-edge medical research and innovation capacity here in B.C.

“We will continue to work to support patients and families facing rare diseases so that they can benefit from advances in care and treatment as this field continues to evolve in the years to come,” she said.