‘Suffering’: B.C. family desperate to get gene therapy for son with rare condition | Globalnews.ca
The family of a B.C. boy with a rare neurodegenerative condition is calling on the government to help them access potential gene therapy treatment.
Navpreet and Stalin Gill told Global News 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.
Stalin said it was devastating news.
“Having a child in your life is the best feeling,” he said. “And, you know, like having the worst diagnosis that you can think of, you know, when you receive it, it just kills you inside … it just breaks you. It’s terrible.”
Stalin said it has shattered them to know that their son is going to be in pain.
“When he was born, we were thinking about what’s going to happen when he’s going to be three, or when are we going to take him to Disney?” he said.
Stalin said that now the question is when they have to go to the hospital next.
“He’s not able to play with his peers, with similar age kids, because he cannot run that fast, he cannot walk, he stumbles, he falls down,” he added
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“And it’s a neurodegenerative disease. It’s progressive. So it’s not something that, oh, it stops. It just gets worse with every minute, every second, every day. It’s a suffering. It’s emotional suffering.”
Navpreet said that as parents, you have dreams for your child and you wonder what sport they might play or if they enjoy dancing or running, but she said that has all been taken from Gurmoh.
“The specific mutation that he has, it’s considered the most aggressive out of, you know, that category, and it’s considered to be more of a complex presentation,” she said.
“What that means is, in addition to the legs, he could end up losing the abilities in his arms, speech, mental capacity, so pretty much like it’s going to take everything away from him.”
Stalin said they are now racing against time to get gene therapy, but they are being met with opposition at every turn.
They are also out thousands of dollars for tests, treatments and travel.
He said they have reached out to the B.C. government, which said they cannot help, so they reached out to the federal government.
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 federal government does have a national strategy for drugs for rare diseases, where it has made “up to $1.4 billion in funding available to provinces and territories through three-year agreements, to help them provide better coverage and access to elected new drugs for rare diseases on the common list, other new and existing drugs for rare diseases and screening and diagnostics services.”
Global News has reached out to the federal government to find out more about the funding and how it’s being used.
“We’re fighting with the disease,” Stalin said. “We’re fighting with the system, you know, the system that should be supporting us, the system that should be spending money on developing these therapies, making it easier.”
He said it is hard to open up their lives and their struggles, but they want to help change the system.
“(We want) everybody to understand how difficult it is, for patients, for their families, for the grandparents, for their uncles, aunts,” Stalin added.
“It’s not us involved in this. It’s our whole friend circle, whole family, who’s helping us out with this. It’s terrible.”
The family has started a GoFundMe to try and raise money, which will go live on Friday, April 10.
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