GOLDEN LAKE, ONT – Dana Pearce and Brody Verch have been waiting for a miracle for their one-year-old son Kevin.
At the end of December, Kevin was diagnosed with type 2 spinal muscular atrophy; a disease that results in the loss of nerve cells in the spinal cord. SMA attacks muscles causing weakness and narrowing them.
SMA affects one in 10,000 people.
“At about six months, that’s when we noticed something was wrong because he was starting to lose the ability to clap, wave and kick,” says Pearce. “Now he can’t get on his stomach or lift his head at all. ”
CHEO pediatric neurologist Dr. Hugh McMillan follows 10 ADS patients in Ottawa, including Kevin.
“Her diagnosis was earlier than what we sometimes see for children with spinal muscular atrophy,” said Dr. McMillan.
Thursday Kevin started a treatment called Spinraza. It is a continuous treatment of several injections each year for the rest of a person’s life, but the cost is only covered until the age of 18.
Kevin’s best chance of beating SMA is a treatment called Zolgensma. It is a one-time treatment that should be given at the age of two. Kevin is currently 14 months old, which means he would need the drug by November.
The problem with Zolgensma is that it costs $ 2.8 million.
To help pay for the treatment, Kevin’s family opened a GoFundMe page, which raised over $ 80,000 in the first week.
“This is a crazy number and it’s amazing that a pharmaceutical company puts such a high price tag on something that could give a baby with ADS the gene they lack to help them live the best possible life,” Pearce says. “We just wish a miracle would happen and we will have the chance to give him the best life he can have with this Zolgensma drug. ”
This miracle may have happened on Friday. Following CTV News Ottawa’s visit with the family, an Ontario Ministry of Health decision has been issued announcing that Zolgensma’s funding requests will now be considered on a case-by-case basis.
“It’s possible that if the province and the people working under the Department of Health’s exceptional access program felt a child qualified, they could be covered,” McMillan says. on a case-by-case basis to let us know if they believe an individual case or a child meets the criteria. ”
It’s news that brings hope to Kevin’s family, but it doesn’t stop the race against time.
“We want him to have the chance to get it,” Pearce says. “And just finding out that he has SMA at 13 months, with our 10 month run to try and give him the chance to have Zolgensma, we just hope for the best. ”
“Once we are able to afford the drugs, we can act quickly enough to get them to our hospital and administer them safely,” says McMillan, who is filing a claim with the province for Zolgensma on behalf of the family. .
Pearce says that until treatment is certain, they will continue to fundraise. So in case this is not needed, the family has already come up with the idea of launching an SMA awareness campaign for the benefit of others similar to them in need.
“I’m just amazing how many people want to help us and are trying to help our baby get what he needs,” Pearce says.