One-year-old Harper Hanki was diagnosed with a genetic disorder almost nine months ago.
Spinal Muscular Atrophy-Type 1 affects the muscles that control movements such as head control, sitting, crawling, and in severe cases, swallowing and breathing.
The drug company Novartis is seeking approval for its single-dose IV treatment called Zolgensma, and the green light could come as early as year end. However, provincial funding for the drug could take up to another two years following federal approval.
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.
The Hanki family doesn’t have time to wait for provincial funding, and is facing a $2.8-million bill for Harper’s treatment.
Family friends are raising money for Harper through an ongoing bottle collection in the Wetaskiwin area and beyond.
“We have twins who are not much younger than Harper, so it hit close to home,” says Brianne Goddard.
“We had to do something,” says husband Chris Goddard.
The Goddards have a trailer, 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, with hopes of raising enough money 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, a GoFundMe campaign for Harper sits at just over $155,000, a small dent in what needs to be raised.
To reach out to the Goddard family for bottle collection, call 780-243-2744. For more information on how you can help, visit www.myheroharper.com.
shaela.dansereau@pipestoneflyer.ca
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