My friend Tanis and I have started a fundraising campaign for our friend’s young daughter, who has been diagnosed with Spinal Muscular Atrophy Type 1 (SMA1).
We will be collecting funds to go towards an available treatment for this debilitating and deadly disorder – and in return, we will be offering up our hair.
Our locks will in turn be donated to another charitable organization, A Childs Voice Foundation, that creates wigs for children in need through their Angel Hair for Kids Program. Win-win, and you can feel good knowing that your donation has helped not one but a few children, in different ways.
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.
Here’s the thing – there is a treatment that could halt this monster in it’s path and give Harper the chance at a healthy happy future. This one time IV treatment, called ZOLGENSMA and created by the drug company Novartis, replaces the missing or non-working gene with a new copy.
Zolgensma has unfortunately not been approved for use in Canada as of yet, and there is a small window of opportunity to administer it – only children below the age of two are eligible.
The price tag for this life saving one time treatment is set at the bewildering rate of 2.1 Million USD.
The cost is incredibly high, and time is truly of the essence with Harper’s first birthday just passed, but we have nothing to lose and everything to gain for a chance at providing her with a bright future. We have faith that if enough people are reached, this treatment might be a real option.
To view Harper’s story, please visit the link here:
Please visit this link to a CTV story done on their family:
Our Facebook Event page:
And to read more about Harper visit her Instagram account at @myhero.harper
Every little bit helps and if you can’t make a donation, we would really appreciate if you could share her story on your social media, to help spread the word!
Thanks so much for reading!