Hi friends, this is an a-typical post for me, but it’s an important one:
My precious niece, Everly, at the age of 2 years old, began having seizures and rapid regressing causing her to lose all her abilities due to a genetic disorder called FRRS1L (pronounced Frizzle). It’s been heartbreaking for my brother and sister-in-law to watch their daughter struggle and fight for her life. Everly requires constant and intense 24/7 nursing care. Although she is severely handicapped and trapped in a body she can no longer move, she is cognitively sharp and capable. I can tell you that when she sees you, her eyes light up. Actually Everly’s eyes are the only thing she can control on her body post regression. Thankfully she is able to use an eye gaze communication computer at home, church, and school to say, “Hold my hand”, “Play with me” or “I love you”.
The amazing thing is that researchers have found a cure by testing a one time injection of gene replacement treatment into Frizzle bred mice. When injected the mice came back to function! Everly and her Frizzle friends around the world now grip onto the hope to have their function RESTORED! However, in order to get Frizzle kids treated the families have to fund the process to get it produced. Costs for this process are immense, but what wouldn’t you do as a parent to help your child live? It would be heartbreaking and overwhelming for any parent to have the hope of healing but not the means to get it to their child.
I share this with you because so many of you have been touched by chronic illness, chronic pain, and the fallen effects of this world in your life or the life of a loved one. And it can be truly devastating. If you have any connections to funding for helping in causes like this, please let me know, and if you have any ability to contribute, it would mean the world to me (and of course, my brother and SIL). My niece is participating in a kid’s adaptive triathlon this week to raise money for her treatment, where she will be accompanied by an adult athlete who will swim, run, and bike pulling her in special equipment. It’s a great way to support if you’re able. And please share with anyone who you think might like to participate. The link to donate is below. Thank you beyond words for both prayers, donation, or sharing with others to give them the hope that treatment may be possible while there is still time.
This girl is beautifully and wonderfully made by our Creator, and she is truly a precious one. ❤️
With Gratitude,
Sarah
Set Apart 