Happy Friday everyone!
Our head shaving event is now just a little over a week away, and we couldn’t be more excited for it!
On a very sweet note, we will have one more joining us on October 4th when we lose our locks. Harper’s big sister, four year old Kinsley, has decided to join us in cutting her hair for the FIRST TIME ever, in support of her little sister.
Tanis, my incredible best friend and the event organizer, has also put together an Online Auction, with bids opening the day of the event and closing October 7th (https://www.facebook.com/onlineauctionforharperhanki) .
As of today, we have raised close to half of our fundraising goal of $30,000 and with one week left to go and including the proceeds of the auction, we are hoping to raise as much as possible to go towards Harper’s fight for Zolgensma, a one time IV gene therapy treatment.
This drug is unfortunately only available to children under the age of two. At the time of posting the first article on Harper in July, she had just turned one.
It is now almost October – meaning the next 10 months before Harper’s second birthday are crucial.
Harper’s family and supporters are a force to be reckoned with and will continue to fight tirelessly, however we still need your help to give Harper the chance she deserves at having a bright and healthy future.
In addition to our fundraiser: https://ca.gofundme.com/f/fq478-hope-for-harper there are so many other ways you can help be Harper’s hero this month and I’ve included just a few below:
- Download the FlipGive app (team code RHZQZP). You can spend money on things like gas/grocery/dining gift cards/shopping at your favourite stores or ordering skip the dishes – and a percentage of these purchases will go directly to Harper!
- Silent Auction via Harper’s Instagram @myhero.harper – September 26th to 30th
- Bottle Drives – put your empties to good use with various drop off locations in Alberta, and at Return-It Express Depots in British Columbia
- Sober October – buy a ticket for $30, which gets you a T-shirt and an entry into a raffle, and challenge yourself to a sober October! Donate any monies which may have been spent otherwise to Harper’s treatment, and there are prizes for most savings donated! https://www.tickettailor.com/events/myheroharper/413000/
- Tattoo Fundraiser – Book a spot at Black Market Tattoo, minimum $50 donation. Takes place October 10th in Edmonton! http://www.blackmarkettattoo.ca/
- Partake in ‘$5 Fridays’ – Donate $5 on Fridays and encourage your friends to do the same!
For more details on these campaigns, and information on other ongoing efforts, please visit: https://www.facebook.com/myhero.harper
I’ve also included below a video made by Harper’s incredible mama, showcasing their journey so far and sharing what they have been through since receiving Harper’s diagnosis. Please watch, and please consider sharing this.
Tanis and I are so grateful to each and every person who has donated and shared Harper’s story so far, and we hope that everyone will continue fighting for her.
Thank you for reading, sharing, and caring – any effort, large or small, can make the difference for Harper!
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!