611
611
7

Hope for Shailynn Taylor

$112,952 of $200,000 goal

Raised by 619 people in 13 months
Created May 28, 2018
Fundraising Team
on behalf of Shailynn Taylor
WHAT IS SMA

 Shailynn was diagnosed with SMA (Spinal Muscular Atrophy), an incurable and terminal disease, when she was just 18 months old.  She had low muscle tone and was unable to reach milestones with the expected strength.  Shailynn was given a life expectancy of 13 years, and when she was 19, she was told she had two good years left.  Every day she wakes up is a miracle; she's 22 years old.   


 Imagine your brain being unable to communicate with your muscles due to a disease that destroys the motor neurons that control your arms, legs, chest, face, throat and tongue. That’s SMA, or Spinal Muscular Atrophy.  About 1 in 6000 newborns are affected, and about 1 in 40 people carry the gene for SMA. 

 
WHY NOW

 Just over one year ago, everything changed. Spinraza was approved as the first available disease-specific treatment for SMA and it became available in Canada. After a year of patience, persistence, and meetings, we find we are unable to access government or health insurance funding for the one treatment that can extend Shailynn’s life.


One dose of Spinraza comes with a cost of $60 000. With the initial dose, the progression of the disease and the weakening of the muscles can be stopped. By the second dose, the missing SMN protein begins to rebuild - meaning potential regeneration of strength recently lost in Shailynn’s arms, speech, neck and core.

 
THE PLAN

 Once funding is in place, Shailynn will receive the treatment in Calgary where she is enrolled in University.  The first dose of Spinraza could guarantee that Shailynn will never lose the ability to breath or swallow.  Although it is recommended that she receives five treatments in the first year, any number of treatments will be beneficial.  The money raised from this Go Fund Me page will go exclusively to her medical treatments and expenses. 
 

In the past year, the fight for access to SMA treatment has brought together a community of strength, generosity and compassion like never before. Every little bit counts.

 
Shailynn has been a voice for SMA.  A few of her numerous contributions include advocating for funding at Parliament, speaking at national and community-based events, and mentoring families and individuals with SMA. 

 
30213144_15275625430_r.jpeg

 
For those that know her, Shailynn has a voice that needs to be heard.   Ask her yourself- you can find her story @ShaiBrookeTayy on Instagram.
 
30213144_15275625750_r.jpeg
+ Read More
Thank you to all you amazing people who made it possible for Shailynn to get her first treatment. They were successful this time!!. ❤️❤️❤️ all of you.
+ Read More
Post by Shai -

‘The only thing that separates failure from success is another attempt’

The Doctor on the right doesn’t mess around (especially with the threats he received from Jessica ) and thankfully is already prepared for attempt #2. Yesterday was rough. They tried really hard, my whole support crew tried really hard ( Justine was also there as she always is for me) and I tried really hard. I’ll be honest, it wasn’t pleasant and to end the multiple attempts with no Spinraza running through my body was heart breaking. The man on the right, My neurologist, the one who made my first attempt possible so quickly has worked his magic again.

SPINRAZA ATTEMPT #2:
Monday June 25, exactly one month after Lewiston’s second birthday
+ Read More
Thanks to everyone who has donated. Shailynn gets her first treatment tomorrow and now we need to get funds in place for the second treatment. Thank you so very much for support and dedication to getting her the treatment she needs.
+ Read More
Posted by Shaunna Taylor on June 11/18:

What an incredible day. Today I spoke on the phone with SMA 360 and they are selling a dose of Spinraza to us. Our family can not thank all of you enough. The support from our community, family and friends throughout Saskatchewan, Alberta, Canada and The US have made this possible. Tomorrow we should hear when the date of injection will be. This injection brings us all hope and gratitude. Thank you to each and everyone of you who continue to help us provide the best life possible for Shailynn. We appreciate all the prayers and support. We love you all. ❤️
The Taylor Family.
+ Read More
Read a Previous Update

$112,952 of $200,000 goal

Raised by 619 people in 13 months
Created May 28, 2018
Fundraising Team
on behalf of Shailynn Taylor
Your share could be bringing in donations. Sign in to track your impact.
   Connect
We will never post without your permission.
In the future, we'll let you know if your sharing brings in any donations.
We weren't able to connect your Facebook account. Please try again later.
$10
Anonymous
1 month ago
ME
$15
Mark Edge
3 months ago
SM
$100
Shaun Mitchell
5 months ago
DK
$10
Deirdre Kenneally
6 months ago
MS
$25
Mariya Shireen
6 months ago
CC
$40
Cheryl Crawford
6 months ago
TD
$100
Terri Dowen
6 months ago
$500
Anonymous
6 months ago
SP
$200
Sharon Pritchard
7 months ago
$200
Helen Todd Armstrong
7 months ago
or
Use My Email Address
By continuing, you agree with the GoFundMe
terms and privacy policy
Receive occasional updates from GoFundMe about how to help others. Change your preferences anytime
There's an issue with this Campaign Organizer's account. Our team has contacted them with the solution! Please ask them to sign in to GoFundMe and check their account. Return to Campaign

Are you ready for the next step?
Even a $5 donation can help!
Donate Now Not now
Connect on Facebook to keep track of how many donations your share brings.
We will never post on Facebook without your permission.
Receive occasional updates from GoFundMe about how to help others. Change your preferences anytime