GOLDEN LAKE, ONT -- Dana Pearce and Brody Verch were waiting on a miracle for their one-year-old son Kevin.
At the end of December, Kevin was diagnosed with spinal muscular atrophy (SMA) type 2; a disease that causes the loss of nerve cells in the spinal cord. SMA attacks the muscles causing weakness and shrinking them.
SMA affects one in 10,000 people.
"At about six months, that’s when we noticed something wasn’t right because he was starting to lose the capability of clapping, waving, and kicking," says Pearce. “Now he can’t go on his tummy or lift his head up at all."
CHEO paediatric neurologist Dr. Hugh McMillan follows 10 patients with SMA in Ottawa, including Kevin.
"His diagnosis was earlier than we sometimes see for children who have spinal muscular atrophy," said Dr. McMillan.
On Thursday, Kevin started a treatment called Spinraza. It’s an ongoing treatment of multiple shots every year for the rest of a person’s life.
Kevin’s best chance of beating SMA is a treatment called Zolgensma. It’s a one-time treatment that needs to be given by the age of two. Kevin is currently 14 months old, meaning he would need the drug by November.
The problem with Zolgensma though is that it costs $2.8-million.
To help pay for the treatment, Kevin’s family started a GoFundMe page, which raised over $80,000 within the first week.
"It’s a crazy number and it’s unbelievable that a drug company would put a price tag that high on something that could give a baby with SMA the gene they are missing to help them have the best life that they can," says Pearce. "We’re just wishing that a miracle will happen and we’ll have the chance to give him the best life that he can have with this drug Zolgensma."
That miracle may have happened Friday. Following CTV News Ottawa’s visit with the family, a decision by Ontario’s Ministry of Health came out announcing applications for funding of Zolgensma will now be reviewed on a case-by-case basis.
"There is a chance that if the province and the individuals that are working in the Ministry of Health’s Exceptional Access Program felt that a child qualified, that they could be covered,” explains McMillan. “They will be looking at applications on a case-by-case basis to let us know if they feel that an individual case or child meets the criteria.”
It’s news that brings hope to Kevin’s family, but it doesn’t stop the race against the clock.
"We want him to be able to have the chance to get it," says Pearce. "And with just finding out that he has SMA at 13 months, with our 10-month race to try and give him the chance to have Zolgensma, we’re just hoping for the best."
"Once we have an ability to pay for the medication we can move quite quickly in terms of bringing it to our hospital and administering the medication safely," says McMillan, who is filing an application to the province for Zolgensma on behalf of the family.
Pearce says until the treatment is a certainty they will continue to fundraise money. If in the event that it’s not needed, the family has already proposed the idea of starting a SMA awareness campaign to benefit others similar to them in need.
"Just been amazing with how many people want to help us and are trying to help our baby get what he needs," says Pearce.
