The Goddard family bottle collection trailer with their contact information and how much money has been raised towards their goal for Harper Hanki’s treatment so far. Photo by Shaela Dansereau. The Goddard family bottle collection trailer with their contact information and how much money has been raised towards their goal for Harper Hanki’s treatment so far. Photo by Shaela Dansereau.

Wetaskiwin County locals collecting bottles for little girl in need of miracle treatment

The money is being raised for a miracle $2.8 million treatment for one-year-old Harper.

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

Get local stories you won't find anywhere else right to your inbox.
Sign up here

 

Harper Hanki. Photo from www.myheroharper.com/ Hanki family gofundme page for Harper.

The Goddard family bottle collection trailer with their contact information and how much money has been raised towards their goal for Harper Hanki’s treatment so far. Photo by Shaela Dansereau.

Just Posted

Thorsby RCMP called to plane crash this weekend

Thorsby RCMP located two deceased occupants in the plane.

Wetaskiwin Mayor Tyler Gandam acclaimed to AUMA Board of Directors for Second Term

This will be Mayor Gandam’s second consecutive term.

Central zone down to 16 active COVID-19 cases

Alberta Health Services’ central zone is down to 16

Millet Agriplex to become a hub for indoor soccer

Wetaskiwin Soccer Club will be operating out of the Millet Agriplex this season.

Ermineskin Kindergarten has a confirmed case of COVID-19

The school has shut down and Cohort 2 is in self-isolation

QUIZ: Do you know what’s on TV?

Fall is normally the time when new television shows are released

First annual Best of Wetaskiwin Readers’ Choice Awards

Enter to win a $200 gift card for Canadian Tire.

Canadian ski resorts wrestle with pandemic-vs.-profit dilemma as COVID-19 persists

Few are actually restricting the total number of skiers they allow on the hill

End of CERB means uncertainty for some, new system for others

As of a week ago, the CERB had paid out $79.3 billion to 8.8 million people

No winning ticket for Friday night’s $50 million Lotto Max jackpot

Jackpot for the next draw will grow to approximately $55 million

Wilkinson aims to be B.C. premier after cabinet role, working as doctor and lawyer

The B.C. election is Wilkinson’s first as the Liberal party leader

First Nations police services look to throne speech pledge for higher, stable funding

‘I won’t be happy until I hear two words: royal assent’

8 charged, $260K in drugs and cash seized in massive Alberta drug bust

Eight people are facing 33 charges in what police have dubbed Project Incumbent

‘We’re losing what makes the Parkland so distinctive,” conservation specialist says

The Lacombe district will lose two sites with provincial park status: JJ Collett and the Narrows

Most Read