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)

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.”

View this post on Instagram

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.

READ MORE: Kelowna fire department uses harness to rescue hiker stranded on cliff

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.

READ MORE: Heat warning in effect for Okanagan-Shuswap


Daniel Taylor
Reporter, Kelowna Capital News
Follow me on Twitter

 

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)

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)

Just Posted

Teslyn Bates, a Grade 11 student at Salmon Arm Secondary, was among four musicians from the Shuswap who won awards at the 2021 Virtual Performing Arts BC Festival held June 1-5. (Contributed)
Province takes note of young Shuswap musicians at June festival

Four local contestants receive awards at 2021 Virtual Performing Arts BC Festival

Shuswap Immigrant Services Society plans to hold a vigil on Friday, June 25 at 8 p.m. to honour the victims of what officials are calling a terrorist attack on five Muslims in London, Ont. (File photo)
Salmon Arm council holds minute of silence to honour victims of Ontario attack

Shuswap Immigrant Services Society plans vigil for Muslim family on June 25, 8 p.m. at McGuire Lake

A first-dose mobile vaccination clinic is being held on Tuesday, June 15 from 11 a.m. to 6 p.m. at the Salmon Arm fairgrounds, west entrance across from spray park. (Interior Health image)
Location for Salmon Arm’s June 15 COVID-19 mobile vaccine clinic changes slightly

Immunization clinic still at fairgrounds but people attending asked to use different entrance

Felix Haase and Jayme Saretzky staff a pop-up booth to support the Salmon Arm Pride Project on the patio of the newly reopened Wild Craft Mercantile at 121 Shuswap St. on Saturday, June 12, 2021. (Martha Wickett - Salmon Arm Observer)
Wild Craft Mercantile in Salmon Arm holds grand reopening, celebrates Pride month

Store moves from Lakeshore to Shuswap, demonstrates support for Pride project

Tim Gibson joined the Shuswap Children’s Association on June 14, 2021. He is taking over the executive director position as June Stewart is retiring on June 30, 2021. (File photo)
New executive director joins Shuswap Children’s Association

Outgoing executive director June Stewart to retire on June 30, 2021

People watch a car burn during a riot following game 7 of the NHL Stanley Cup final in downtown Vancouver, B.C., in this June 15, 2011 photo. THE CANADIAN PRESS/Geoff Howe
10 years ago: Where were you during the 2011 Vancouver Stanley Cup Riots?

Smashed-in storefronts, looting, garbage can fires and overturned cars some of the damage remembered today

Ivy was thrown out of a moving vehicle in Kelowna. Her tail was severely injured and will be amputated. (BC SPCA)
Kitten thrown from moving vehicle, needs help: Kelowna SPCA

The seven-month-old kitten had severe tail and femur injuries

Vernon Elks Lodge secretary-treasurer Maureen Sather says special relief funding for the organization courtesy of Community Futures North Okanagan has been just that: a relief. (Photo submitted)
Zero funding for Vernon Elks club

Once-in-100-years grant denied after back and forth with city for support

Lyndsay Fillier and Braden Taylor have been living the van life for four years and they've detailed the first year of their adventures in a new book. (Twila Amato/Black Press Media)
VIDEO: Okanagan couple details first year of van life in new book

Lyndsay Fillier and Braden Taylor have been living the van life for four years

A young child was taken to hospital after being struck by a vehicle on 30th Avenue in Vernon Friday, June 11, 2021. (Jennifer Smith - Morning Star)
Child OK after being hit by car in Vernon

Father says daughter was back home by supper time

A health-care worker holds up a sign signalling she needs more COVID-19 vaccines at the ‘hockey hub’ mass vaccination facility at the CAA Centre during the COVID-19 pandemic in Brampton, Ont., on Friday, June 4, 2021. This NHL-sized hockey rink is one of CanadaÕs largest vaccination centres. THE CANADIAN PRESS/Nathan Denette
‘Vaxxed to the max’: Feds launch Ask an Expert campaign to encourage COVID shots

Survey shows that confidence in vaccines has risen this spring

Port Alberni court house (Alberni Valley News)
Inquest set into 2016 death of B.C. teen after a day spent in police custody

18-year-old Jocelyn George died of heart failure in hospital after spending time in jail cell

Children’s shoes and flowers are shown after being placed outside the Ontario legislature in Toronto on Monday, May 31, 2021. THE CANADIAN PRESS/Frank Gunn
Ontario commits $10 million to investigate burial sites at residential schools

Truth and Reconciliation Commission identified 12 locations of unmarked burial sites in Ontario

Two hundred and fifteen lights are placed on the lawn outside the Residential School in Kamloops, B.C., Saturday, June, 13, 2021. The remains of 215 children were discovered buried near the former Kamloops Indian Residential School earlier this month. THE CANADIAN PRESS/Jonathan Hayward
Days after Kamloops remains discovery, Tk’emlups families gather to unite, move ahead

‘We have to work together because this is going to be setting a precedent for the rest of the country’

Most Read