Family of 6-month-old baby with rare illness hopes to raise $3M for treatment
TORONTO -- The parents of a six-month-old baby suffering from a degenerative and rare condition are hoping that with a little help from Canada’s hockey stars they may be able to raise enough money for her treatment.
Mark and Laura Silva’s six-month-old daughter, Rebecca, has Spinal Muscular Atrophy (SMA) Type 1, a neuromuscular disorder that results in the weakening of muscles used for movement. Her parents say that 95 per cent of babies with SMA Type 1 do not reach their second birthday.
Rebecca is on an expensive medication to slow the disease down, but what they really want for her is Zolgensma, known as the most expensive medicine in the world. The one-time treatment takes six- minutes and targets the genetic defect that causes SMA.
The treatment costs $2.1 million USD--about $3 million in Canadian funds.
The family’s GoFundMe campaign got a big boost recently from Toronto Maple Leaf Mitch Marner, who made a donation from his own foundation. When he tweeted his support for Rebecca, his fans began to pick up on the campaign.
MORE: Why a life-saving drug for babies with a rare muscular disease costs 2.8M for families
“I heard about how we could help out and obviously with the platform we have here you want to try and help as much as you can so I got the name out there, try to help out with the donations, try to raise as much money as possible," Marner said.
Rebecca’s father, a firefighter with the City of Vaughan, had helped put out a fire at Marner’s home years ago.
“So he’s kind of returned the favour a little bit on to me,” Mark said.
Mark said that Steve Stamkos, the captain of the Tampa Bay Lightning, is an old schoolmate and also pushed their campaign forward.
The Silvas said Rebecca’s condition is slipping—she now has to use a gastric tube for feeding because the milk she was drinking would go into her lungs and choke her.
All the celebrity help has brought them to over $280,000 in their fundraising campaign.
Zolgensma is only given to children under age two and they sadly note that many children with SMA don’t even make it to that point. The drug is not yet approved in Canada, so the family would have to go to the United States, probably Boston, to get the infusion - if and when they get the money.