One-year-old Harper Hanki was diagnosed with Spinal Muscular Atrophy- Type 1 (SMA1) almost nine months ago. This genetic disorder is characterized by weakness and atrophy of the muscles and it affects the muscles that control movements such as head control, sitting, crawling and in severe cases, swallowing and breathing.
A one-time IV-treatment drug called Zolgensma from the drug company Novartis has been applied for approval in Canada, which could come as early as this year’s end. However, the provincial funding for the drug can take up to two years following its federal approval.
The issue with this is that Zolgensma is only prescribed to children under the age of two because the sooner treatment is given, the more effective it is at preventing irreversible muscle damage.
At one-year-old, the Hanki family doesn’t have the time to wait for provincial funding, and are staring down the barrel of the $2.1 million USD cost for Harper’s treatment, a grand total of $2.8 million Canadian.
Harper and her family are faced with the same challenge that afflicted the Martin family from Edmonton earlier this summer. Kayson Martin has the same condition as Harper and the family was unable to meet the $2.8 million goal before he turned two.
Family friends of the Hankis, the Goddards, are taking initiative to help fundraise for Harper by doing an ongoing bottle collection in the County of Wetaskiwin and beyond.
“We have twins that are not much younger than Harper, so it hit close to home,” says Brianne Goddard.
“We had to do something,” says Chris Goddard.
The Goddards have a collection trailer for their continuous bottle drive and say that given enough notice, they are more than happy to come to people to collect the bottles within the week. From there the funds will be donated to the Hanki family to raise enough for the lifesaving drug that Harper needs.
“You can sell everything you own and not even come close,” Chris says about the overwhelming price of the drug. However, “If 300,000 people give $10 a piece, she’ll live beyond two.”
Right now the gofundme for Harper is just over $153,000, a small dent in what needs to be raised.
Chris says in his discussions with the Hankis, they were recently disheartened over the sheer amount of money raised in hours for the Oilers 50/50 jackpots while they struggled to raise the funds for Harper’s treatment.
Some of the ways to donate to help the Hanki family with the treatment cost include their gofundme page: My Hero Harper- Spinal Muscular Atrophy Treatment, donations for their online auction through the myhero.harper Instagram page, and various My Hero Harper bottle drives, including the one run by the Goddard family.
To reach out to the Goddard family for bottle collection you can contact 780-243-2744. For more on how you can help and Harper’s story visit www.myheroharper.com.
shaela.dansereau@pipestoneflyer.ca
Like us on Facebook and follow us on Twitter
