Letters to Harper, written by the Grade 7 class at Ecole St. Gerard School (photos courtesy of Monique

By Liam Verster

My Hero Harper

Grande Prairie students launch campaign to support toddler with rare genetic disorder

Sep 14, 2020 | 3:02 PM

The Grade 7 class at Ecole St. Gerard School has launched an awareness campaign in support of an Alberta toddler with a rare disorder.

Harper, a 14-month-old baby girl, is battling the rare disorder called Spinal Muscular Atrophy- Type 1 (SMA1). SMA is a genetic disorder caused by a lack of nerve cells, called survival motor neurons (SMN), which control muscle movement. This disorder tends to cause muscle weakness, breathing difficulties, along with trouble sucking and swallowing.

There is a treatment for SMA1, a one time IV treatment of Zolgensma, a drug by Novartis, which replaces the missing or non-working SMN gene with a working one. However, the drug has only been approved in the USA, Japan, and Europe.

In June 2020, Novaris applied to have the drug approved in Canada, but there are concerns it could take between 12 and 24 months to be approved at a federal level, and because Zolgensma is only prescribed to children under the age of two, time is of the essence.

The drug can be imported for use, and Harper’s family is trying to raise money to purchase a dose of Zolgensma, but paying out of pocket could cost upwards of $2.8-million dollars.

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Monique Tardif-Blakley, the teacher of the Grade 7 class at St. Gerards, says she heard about this cause and brought it forward to her class as an idea for their annual service project.

The class has now launched an awareness campaign to help raise money for Harper through an existing Go Fund Me campaign. The class is also writing letters to schools across Alberta, urging others to get involved and help raise the money and awareness for Harper’s treatment.

The class has connected with Harper’s family directly, and this week the students sent off letters of hope to the family. The family has previously reached out to the class with a video message, and later plan to hold Zoom calls with the students so they can get to know Harper, the family, and the cause better.

Tardif-Blakley says that, while it may not be as close to home as making meals for a local food bank or donating clothing to a local shelter, this cause, unlike the others, is on a strict timeline. Harper’s life could be at risk if she doesn’t receive the medication soon, and Tardif-Blakley felt that it was important to try to help out and do her part.

Tardif-Blakley says she is still working out details of any potential local fundraiser, but while those ideas have all been delayed by COVID-19, some families from the school have come forward with ideas.

“I have one mom who’s wanting to set up a bottle drive, where you can drop off your bottles and they just take of it there, and there’s another mom who’s trying to get organized with her Epicure sales, and going to donate some of that as well. So different people are doing different little things thanks to this.”

In the meantime, she is encouraging people to visit the Go Fund Me Page, as well as their Facebook and Instagram pages, where they can learn more about the disorder and contribute to the cause.

“If everybody did their $5 part, I think (Harper’s mother) Amanda has on her page $5 Fridays, and she says her belief is that if 500,000 people give $5, baby Harper is saved. So, if 250,000 people give $10 she’s saved, and if you start doing the math, it doesn’t take a whole lot of people, it takes a lot of hearsay: I tell two friends and they tell two friends .”

She adds a $10 donation won’t make an impact on an average person’s day, but together can add up to a lot of money, and potentially save a life.

She also encourages businesses in Grande Prairie to make a donation. She compares the donation to the cost of a cup of coffee for everyone in an office, saying if every business in the Swan City were to take that amount and donate it to the cause, it could go a long way in helping reach that $2.8-million goal.

SMA is very rare and only presents itself in 50 per cent of the children born to parents who both carry the gene, which can be carried without a person’s knowledge. Along with raising awareness and funds, she’s also encouraging people to find out if they are carriers.