Pray Away SMA

12/16/2020

Today, Eve took her first dose of the new oral treatment for SMA, Evrysdi! She won’t be getting the spinal injections every 4 months anymore. She will just take this daily. This is such a blessing. 💜 🧡
Oh & she got a brand new power wheelchair last week! God is good!

08/26/2020

Oh my goodness. I just realized I haven’t posted since 2018. I usually just update my personal page. Eve has been doing well. She has been getting spinal injections every 4 months with the treatment, Spinraza. But... soon, she will be starting a new treatment that is an oral medication she will take daily! We are so excited for this. Please pray that insurance approves this and that she does well with it. In the meantime, she has been helping our local firefighters raise money for MDA through the Fill the Boot campaign. Here’s a cute pic of her in her firefighter boots.
And thank you so much for continuing to pray for our sweet girl. ❤️
P.S. She’s 7 years old now!!

10/16/2018

Eve got her 6th dose of Spinraza today. Please continue to pray that she stays healthy and grows stronger. 🙏🏼

06/08/2018

This girl scored higher on the Hammersmith (the test they use to assess her motor function) than she did at her last evaluation four months ago! Yay for Spinraza!

05/08/2018

Check out that strength and balance! 💪🏼

04/13/2018

Hello there!
I apologize for not posting on this page in so long. Eve is doing so well. She started the new treatment, Spinraza in January! She has had 4 doses so far, and we notice improvement. She has gained more neck control and core strength! Praise God! She will be turning 5 in June. I will do my best to keep updating this page. ❤️

10/24/2016

A little SMA info for new followers

10/24/2016

Please forgive me for not posting any updates lately. We have been really busy in the Johnson house! I post regularly on my personal page, so feel free to keep up with Eve and our family there as well. www.facebook.com/HeatherPrayAwaySMA
This article was released in September. This is a treatment we have been waiting for. Please continue to pray that Eve and all her friends have access ASAP! Like now!!

Biogen and Ionis today announced that Biogen has completed the rolling submission of a New Drug Application (NDA) to the U.S. Food and Drug Administration (FDA) for the approval of nusinersen, an investigational treatment for spinal muscular atrophy (SMA). Biogen has also applied for Priority Review...

06/14/2016

My brave girl has a small fracture. She is the toughest girl EVER! She was exercising on her knees while her sisters had gymnastics. Her little bottom fell back onto her heels. Apparently, her bone "bent" a little and caused a buckle fracture. Getting casted Monday.

06/01/2016

We are so blessed, and Eve is so loved. Today was Eve's 1K. So many awesome kids came together to support Eve. All of the money raised goes to The Gwendolyn Strong Foundation, an awesome organization dedicated to raising awareness, accelerating research and helping families impacted by SMA. Thanks to Carlye Bindel and Fit4Mom for helping to raise awareness about SMA. We are so grateful for all the sponsors and friends that supported today. I wish I could tag you all, but that might take all day!