The family of a 14 month old Algonquin boy requiring a $2.8 million genetic treatment has just received news they will receive the life altering drug under Jordan’s Principle.
Kevin Verch, also known as Lil’ Kev, has a rare genetic disease known as Type 2 Spinal Muscular Atrophy (SMA). The rare disorder affects one in 10,000 kids and can result in paralysis or if left untreated, death.
Kevin lives in Golden Lake, Ontario about 150 kilometers west of Ottawa with his mother Dana Pearce and father Brody Verch.
Pearce says Lil’ Kev seemed fine for the first six months. She says he was reaching all the normal developmental milestones for babies while growing muscles such as lifting his head up, clapping and rolling over.
“Then at about six months we started to realize that he was losing those and that’s when the real indication was that the there was something wrong,” Pearce told APTN News.
The treatment for SMA is a drug called Zolgensma and the multi-million dollar price tag for the single treatment isn’t by Ontario Health.
Up until last month the only alternative was a drug called Spinraza which is administered through spinal injections three times a year for life.
The newly approved Zolgensma is given once intravenously.
With the help of Jessica Verch, Lil’ Kev’s grandmother, the family put together a GoFundMe page in January to help raise money for the new drug.
The page has raised $100,000 but has since stopped taking donations since the news that Lil’ Kev will be covered under Jordan’s Principle.
Pearce says Grandma Verch did most of the work applying under the program.
“Brody’s mom, my mother-in-law, Jess Verch did that all. We filled out some papers through Brody’s status,” Pearce recalls, “They pretty well got back to us that day later in the evening that they’ll approve Kevin.”
Brody Verch is a member of the Algonquins of Pikwakanagan First Nation and said they were also instrumental in them getting the support they needed.
The parents feel that Lil’ Kev getting the treatment he needs so quickly is a miracle.
Brody Verch welcomes the rare opportunity his son has to receive the treatment but also said it’s a little frightening, especially knowing that Kev will still have to endure physical therapy.
“Reading the possible side effects is nerve racking too at the same time, but I’m very grateful for how everything went down. It’s pretty amazing,” Verch said.
The family is expecting Kevin will receive his Zolgensma treatment in February and with the physiotherapy they realize that they still have a long journey ahead.
The hope is that Kevin will be able to get back 100 per cent of his motor skills but Zolgensma is not a cure, rather it’s the best chance Lil’ Kev has.
According to the government’s website, Jordan’s Principle “makes sure all First Nations children living in Canada can access the products, services and supports they need, when they need them. Funding can help with a wide range of health, social and educational needs, including the unique needs that First Nations Two-Spirit and LGBTQQIA children and youth and those with disabilities may have.”