By Jeff Gard, Northumberland Today
ONTARIO – Jasper More, the two-year-old Palmerston boy recently diagnosed with a rare and debilitating enzyme deficiency disease, will receive treatment through provincial government funding after all.
As reported Wednesday, Aug. 17 through QMI Agency, Jasper was diagnosed six weeks ago with Maroteaux Lamy Syndrome (MPS VI). He is one of eight Canadians who the progressive disease, and its symptoms include stiffening joints, stunted growth, heart and airway disease, spinal cord compression and a shortened life span. Only 1,100 people worldwide have MPS VI, for which there is no cure.
Darren More said he received a call Thursday, Aug. 18 from the family’s genetics doctor to inform them his son would receive the treatment Naglazyme through Canada’s Special Access Program and it will be funded by the Ontario government.
“It was absolutely breathtaking… literally breathtaking. I couldn’t breathe,” Darren More said of learning the news.
He and his wife Pam also have a nine-year-old daughter and five-year-old son.
“It’s such a huge weight off our shoulders. We’re so happy our child is going to get that treatment and have a chance at a normal lifestyle.”
Naglazyme is a treatment which provides patients with a synthetic version of the enzyme they are lacking by infusing small doses of it into the bloodstream. The treatment though can cost anywhere from $300,000 for a small individual to $1 million for a young adult each year. Naglazyme is only available to Canadian patients through the federal government’s Special Access Program. The only provinces funding the treatment are Ontario, British Columbia and Quebec.
Jasper was originally denied funding for the treatment. The More family received that news on Monday, Aug. 15.
It was surprising news to a Campbellford family. Andrew and Ellen McFadyen’s son Isaac, who is now seven, has been receiving the treatment for five years because of provincial funding, which they had to lobby to get. Isaac makes a weekly trip to the Hospital for Sick Children in Toronto for the treatment.
The McFadyens established The Isaac Foundation in 2006 to raise money for innovative research projects that aim to find a cure for MPS VI. They also help families touched by the disease.
Since Aug. 15, the McFadyens helped lobby the government, and created awareness of the More case through social media, bringing it national attention.
“I certainly understand why this doesn’t sit right with Ontario families. I am following up to learn more about this drug and this particular situation,” Ontario Health Minister Deb Matthews told QMI Agency on Wednesday, Aug. 17. “I do know how important this is, and we want to do the right thing.”
Andrew McFadyen heard the news through Darren More.
“For Ellen and I, we’ve been through that and to experience with them in just a small way was very special,” he said.
McFadyen said the treatment for his son has made a world of difference.
“Essentially given him a new life,” he said. “We were told initially he wouldn’t make it to this age, but he has and right now he’s out playing with all of his friends like seven-year-olds should be doing. He has every chance in the world, like every kid should, and that’s all because of treatment. Jasper will have that chance now, too.”