see below update
This is the story of Harper Hanki.
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Harper arrived calm and serene, with a head full of strawberry blond hair on July 12, 2019.
After an eventful pregnancy, her family was thrilled when she was given a clean bill of health. Instantly adored by everyone who met her, Harper’s first week at home was pretty blissful for the now completed family of five.
Within the next few weeks of her life though, it was becoming obvious that Harper was a different baby than her older siblings had been. She spent hours and hours each day crying, was having trouble feeding and wasn’t getting any stronger as she grew older.
Despite their concerns being brushed off, Harper’s parents, Amanda and John, were relentless in trying to get to the bottom of what was going on. They were certain that there must be an answer to explain Harper’s lack of growth and obvious discomfort.
By the age of six months, they had been to the pediatrician twelve times, seen two different lactation consultants, and even had a week stay in the Stollery PICU. 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, on January 19, 2020 Harper was diagnosed with Spinal Muscular Atrophy- Type 1 (SMA1).
SMA is 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.
With this diagnosis of the most aggressive type of SMA, if left untreated, Harper likely would not make it to her 2nd birthday. Equal parts devastated and determined to find more answers, Harper’s family threw themselves into research.
It quickly became apparent that the ideal option was a treatment by drug company Novartis, called ZOLGENSMA. A one-time, IV treatment, Zolgensma replaces the missing or non-working survival motor neuron (SMN1) gene with a new, working copy.
Up until last month, Zolgensma was available only in the United States, but it has recently been approved in the European Union and Japan as well. As of June 18, 2020, Novartis has applied for Zolgensma’s approval in Canada. With its priority status, approval could come as early as this year’s end, however, provincial funding for the drug can take anywhere from 12-24 months after it is approved federally.
Sadly, Zolgensma is only prescribed to children under the age of two. The sooner the treatment is administered, the more effective it is at preventing irreversible muscle damage. With Harper’s first birthday approaching this week, time is of the essence to raise the money to purchase a dose of the drug at 2.1 million USD.
Thanks to Novartis and so many of the hard working professionals in Alberta’s healthcare industry, Harper has been lucky enough to be entered into the “baby lottery” for treatment available to families outside of the U.S. The lottery is a longshot and the family has not heard anything back about any results to date; however, with this application comes a S.A.P. (Special Access Program) through Health Canada to bring in a drug not yet approved in Canada. This was a huge hurdle and is what kept Harper’s family from doing any fundraising as they battled to find a path to treatment over the past six months. Without the ability to have the drug administered in Canada, there was little chance of raising enough money to pay out of pocket to get the drug administered south of the border.
Message from the family
Since Harper’s diagnosis of SMA1 six months ago, our family has adapted to a new normal of appointments, therapy and loving a child who is vulnerable to respiratory viruses which is the leading cause of death for SMA children. Our family and friends have gone above and beyond in understanding and helping any way they can.
Currently Harper is in neuromuscular therapy sessions twice a week at the REYU, with an extra session weekly at the world renowned Glenrose Rehabilitation Hospital in Edmonton, Alberta. She is also fortunate enough to be receiving Spinraza, a drug administered into the cerebrospinal fluid that increases survival motor neuron (SMN) protein production and supports the back up gene SMN-2. We will continue with this treatment until the time that she is hopefully able to receive Zolgensma.
We have never been the type to ask for help and it’s not easy to admit we need it. We know it is a big ask of the community, family and friends to help us get the treatment Harper deserves, and we will be forever grateful to everyone who has and will help fight for our kiddo.
Harpers Instagram page - https://www.instagram.com/myhero.harper/
John and Amanda Hanki (Harper’s parents)
- Kateryna Kuznetsova
- Nicole Ferguson
- Marie-Lynn starnes
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