Alberta tot in need of miracle treatment

Money is being raised for a $2.8-million treatment for one-year-old girl

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

Like us on Facebook and follow us on Twitter

fundraiser

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

Just Posted

Canada’s Kennedy to yesterday’s man: former PM John Turner dead at 91

Politicians and other public figures immediately began sharing memories

Community art project will thank front line workers

Red Deerians are painting hearts to say thank you to frontline workers.… Continue reading

Vaping persists amongst Canadian youth

New survey into vaping habits of youth

QUIZ: A celebration of apples

September is the start of the apple harvest

Five things to watch for in the Canadian business world in the coming week

The 2020 Global Business Forum in Banff, Alta., will be held as a special hybrid event

New tools, ideas needed to speed up housing strategy funding, CMHC president says

Slow turnaround time on some of its national housing strategy programs

Letter containing ricin sent to White House may have come from Canada: RCMP

The letter contained ricin, a toxic substance found naturally in castor beans

Nunavut reports first confirmed COVID-19 cases, saying both are mine workers

The territory says at this time, there is no evidence of transmission within site

B.C. migrant, undocumented workers rally for permanent residency program

The pandemic has shown how heavily Canada relies on migrant and undocumented workers

Wetaskiwin RCMP make arrests for Hit and Run to residence

Damage estimates are expected to be in excess of $20,000.

Former prime minister John Turner dead at 91

TORONTO — Former prime minister John Turner, whose odyssey from a “Liberal… Continue reading

Hay’s Daze: Happy to be left out of the picture

Talk about being out of the loop. Head in the sand. Uninformed,… Continue reading

Most Read