A little girl from Spruce Grove, Alta., is bringing people from across the province together in a fight for a multi-million-dollar lifesaving treatment.
Harper Hanki was diagnosed with spinal muscular atrophy Type 1 (SMA 1) when she was seven-months old. It’s a progressive motor neuron disease that causes her muscles to weaken over time.
Harper is missing the primary gene that delivers the protein neurons to all her muscles, including the heart, lungs and esophagus.
“We had to mourn the life she was going to have immediately. It was a grieving process,” said John Hanki, Harper’s father.
The treatment Harper is on now is temporary. An injection of Spinraza is administered every four months and carries a price tag of $125,000.
“There’s always a slump that comes in between where she’ll lose the ability to sit, to babble and to eat,” said Amanda Hanki, Harper’s mother.
READ MORE: Edmonton moms raising money for toddler needing $2.8M life-saving drug
The family is working towards a $2.8-million goal to pay for a one-time, permanent IV treatment called Zolgensma. It’s only prescribed to children under the age of two. The faster it’s administered, the more effective the treatment is.
Harper turned one on July 12, 2020.
Over 400 kilometres away in Grande Prairie lives Monique Tardif-Blakley, a Grade 7 teacher at École St. Gérard. While scrolling through Facebook one day, she came across a GoFundMe page called My Hero Harper. The post caught her attention.
“It just really was something that hit me in the heart and I thought, I want to help this family, and if at all anything, give them some hope,” said Tardif-Blakley.
She approached her class and told them about Harper and SMA 1. Their response?
“‘Can we help this baby? Yeah let’s try it!'”
The Grade 7 students took it on as part of their service project and started brainstorming ways they could help Harper. To start, about 100 letters were written. Some were sent to Harper as letters of encouragement. The others were sent to other schools around the province asking them to do the same.
“It’s just a different kind of challenge. It’s going to take more than a pair of mittens and a soup kitchen to make a difference to this family,” said Tardif-Blakley.
- ‘Worsening spread’ of deadly fungal infection raising alarm in U.S.
- Allergy season will be short but ‘bad’ in Canada this year, experts predict
- Uganda criminalizes identifying as LGBTQ2, with death penalty for some offences
- Feds to spend $1.5B over three years to improve access to drugs for rare diseases
The support hasn’t gone unnoticed. The Hanki family describes the class as “heroes” for them.
“Children that are cheering us on from afar and they don’t even know us. It’s amazing. It’s nothing short of incredible,” said Amanda.
“We get to read these every night and it gives us inspiration to keep fighting for Harper,” said John, as he thumbed through the stack of handmade cards. Amanda said when she opened one, confetti came flying out.
The class has more plans in the works to help Harper. And they’re not the only ones.
The Hankis estimate about 15 to 20 fundraisers are going on right now in support of Harper. Her supporters come from British Columbia, Edmonton and Toronto.
READ MORE: Fighting for Reign: Alberta boy’s family says he needs $2.8M treatment for rare disorder
“Everyone has been coming together to help in any way they can. It’s literally everything from a drink to a walkathon to a bottle drive. We’re hitting all angles because the target goal of $2.8 million — I don’t know how to do it,” said John.
Zolgensma isn’t available in Canada, at least not yet. It was recently submitted for approval for use in Canada. The Hankis hope that will be done by the end of the year. But the process of negotiating a price could take up to two years — time Harper might not have.
READ MORE: Kaysen Martin’s family frustrated as they await decision on $2.8M drug coverage
In the meantime, the Hankis have a Special Access Program. They fought for the application to pay to bring Zolgensma into Canada and have a physician administer it at a hospital. The funds raised will go towards paying the hefty price tag to do this.
“Until you’re on this journey, you don’t understand how kind and generous people are,” said Amanda.
Tardif-Blakley and her Grade 7 students plan to help in any way they can. When asked if they had anything to say to Harper, the class shouted, “Stay strong!”
One student added, “Let’s make at least one good thing happen in 2020.”
You can follow Harper’s journey on Instagram.