‘A price tag on kids’ lives’: Peterborough parents raise awareness of costly drug for daughter’s rare disease

“Watch,”  Khloe Madgett said as the three-year-old carefully placed a pair of pink sunglasses over her eyes.

“How you doing,” she said, sparking a round of laughter from her Peterborough parents Matt and Jessica.

In many ways, Khloe is like a lot of other little girls. She likes the colour pink, riding her bicycle, and playing with her cat Milo.

But the leg braces covering her calves tell a different story.

“When I ride my bike, I need to wear these, because when I don’t, it hurts my legs,” Khloe explained matter-of-factly.

Tweet This Click to share quote on Twitter: "When I ride my bike, I need to wear these, because when I don't, it hurts my legs," Khloe explained matter-of-factly.

Khloe has Type 2 Spinal Muscular Atrophy. It’s a degenerative disease that is destroying her muscles. There is no cure.

But there is a drug her parents believe is slowing the progression of the disease in other children — other children outside Canada.

Spinraza isn’t available in Ontario yet, Jessica said, and it’s expensive.

At US$750,000 for the first year of treatment and $375,000 for any subsequent treatments, the drug is out of the family’s reach.

“It’s basically putting a price tag on kids’ lives,” Jessica said. “And I don’t know how they can do that.”

Health Canada is reviewing the drug, but Jessica said it’s a process that could take up to three years.

And time is not on the Madgetts’ side.

“Her life is basically a countdown clock,” Matt said. “And it’s unfortunate to live that way, not knowing when it’s going to be Khloe’s turn because her disease is so fatal.”

The Madgetts are trying to raise awareness about the situation.

They’ve teamed up with Lansdowne Place Mall in Peterborough for “Kruzzin’ For Khloe,” a classic car show on July 14.

The cruise begins in Scarborough at 9 a.m., and will travel through Whitby before arriving at the mall by 12:30 p.m.

Donations will be accepted at the show and there’s also going to be a silent auction and a 50/50 draw. But Jessica was quick to say that this isn’t about the money.

“It’s just to get the word out there that there is a drug that’s being reviewed and we still don’t have access to it,” she said. “This will maybe put some pressure on Health Canada.”