Cute-as-the-dickens one-year-old Harper Hanki of Edmonton is in a race against time. Diagnosed with Spinal Muscular Atrophy Type 1 in January, Hanki needs a special drug before she turns two in July 2021. Family friend Tanis Marquette of Vernon has launched an online fundraiser and will shave her head in October with another friend to help raise money for Hanki. (Facebook photo)

Family friends to shave heads and raise $30,000 for one-year-old with Type 1 Spinal Muscular Atrophy

A GoFundMe page and head-shaving event in Vernon has been set up for Harper Hanki

Two family friends of a sick young girl are raising money for medical treatment by shaving their heads at an event in Vernon.

Tanis Marquette of Vernon and Bree Gable of Prince George are shaving their heads in hopes of raising $30,000 for just-turned-one-year-old Harper Hanki’s medical treatment for Spinal Muscular Atrophy Type 1. The pair attended high school in Prince George together with Harper’s dad, John.

“When I heard about Harper, it hit me pretty hard,” said Marquette. “I have kids of my own and if my kids were in trouble, I’d want the community to support us as much as they could. That’s why we’re doing this.”

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Once you get diagnosed, it is a race against time! Every day that goes by means more motor neurons are dying, causing irreparable damage. Life is full of emotion, appointments and procedures. You immediately complete assessments at the neuromuscular clinic, sleep studies, blood tests, feeding assessments, and finally, the four loaded doses of Spinraza – all while trying to juggle two other kiddos and maintain a normal life for them. We are fighting for Zolgensma, a one time IV treatment, at a cost of 2.8 million – seems crazy right – until you learn that Spinraza has a price tag of $125,000 per shot and you initially get four loading doses then one booster every four months for the rest of your life. This shot is administered via lumbar puncture where we spend the day in the day ward at the Stollery. Here, Children are sedated in the OR while their team removes 5ml of spinal fluid and replaces it with a booster of the SMN-2 protein that their body is missing. In one year on Spinraza, Harper’s body will be worth almost $750,000 not including administration costs. Hospitals are not my favourite during normal circumstances. They are definitely not my favourite when my child is taken from me and we watch her fade away behind two double doors knowing we can’t just make her better. #teamharper #teamhanki #spinalmuscularatrophy #smatype1 #sma #smaawareness #suckitsma #spinraza #iwantzolgensma

A post shared by Harper Hanki (@myhero.harper) on

Harper has been receiving doses of Spinraza, a drug that carries a price tag of $125,000 per shot which is administered via lumbar puncture. What the Hankis are aiming for is a one-time IV treatment with a drug called Zolgensma. The cost of the drug is $2.8 million and it will change Harper’s life. Harper, who lives in Edmonton, has to receive this drug before the age of two on July 12, 2021. It is a race against time.

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By the age of six months, Harper’s parents had been to the pediatrician 12 times, seen two different lactation consultants and even had a week’s stay in the Pediatric Intensive Care Unit at Edmonton’s Stollery Children’s Hospital.

Harper had endured multiple ultrasounds, a tongue and lip tie cut, a feeding assessment and several blood tests. Finally, the family was given a referral to a neurologist.

After a series of tests Harper was diagnosed on Jan. 19, 2020 with Spinal Muscular Atrophy Type 1 (SMA1), a genetic disorder caused by a lack of nerve cells, called survival motor neurons (SMN), that control muscle movement. It is characterized by weakness and atrophy of the muscles, and affects the muscles that control movements such as head control, sitting, crawling, and in severe cases, even swallowing and breathing.

The head shave for Marquette and Gable in Vernon is scheduled for Sunday, Oct. 4, at 1 p.m. at the Beauty Bar on 27th Street near Subway. Wielding the hair clippers will be celebrity stylists Betty Selin and Jerhett Schafer from Sun-FM’s Sunrise Show in Vernon.

The event can also be seen through a live video feed on Faceook in order to avoid drawing a crowd due to COVID-19 precautions.

To donate to the initiative, visit this GoFundMe page.

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Daniel Taylor
Reporter, Kelowna Capital News
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Vernon’s Tanis Marquette (right) and Prince George’s Bree Gable will shave their heads to raise money for family friend John Hanki’s one-year-old daughter Harper, who was diagnosed with Spinal Muscular Atrophy Type 1. (Facebook photos)

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