We’re sitting in our dining room, Josh in a corner chair, me at a long table with snacks tempting me from the kitchen. The sun shines in through the windows, teaming up with cider to warm us. Around me sit friends and family, strategizing, thinking and praying together – for our son, for his health and for God to be glorified despite the crushing reality that as he lay sleeping in the next room, Grayson’s life is on the line.
When we learned early this year that our Grayson had Alexander Disease, the devastation was unexplainable. This disease is insidious, ugly, terrible. It destroys the brain and those diagnosed lose the ability to eat, walk, talk, and it eventually steals their quality of life. And because it’s incredibly rare, we have no idea when those changes will happen or where Grayson is in his battle.
Thankfully, shortly after a seizure that prompted the discovery of this serious issue, we walked into Children's Hospital of Philadelphia (CHOP) not realizing that the doctors in that building are some of the only in the world who knew what our son had. Not realizing there were medical minds in that building working on a treatment at that very moment. I get chills thinking about it – about the fact that of all the places we could’ve ended up, we landed on the front door of the only place in the world developing a trial that could benefit Grayson in his lifetime.
Those facts sparked hope in us. But when we learned one of the obstacles to the trial was funding, well, that was unacceptable … in the most literal sense of the word. We could not accept that there was someone out there trying to help our son but unable to fully do so because of funding.
So we didn’t.
That’s how we got here, to Grayson’s Ladder: Climbing to a cure. We can’t imagine a world without our sweet boy, and we know there are other families fighting for their loved ones’ lives at this moment. This is an urgent and life-threatening need. So, our family and friends, alongside trusted and well-versed business advisors in the Chattanooga community, resolved to do something about it and launched this organization as a component fund of the Community Foundation of Greater Chattanooga.
Grayson’s Ladder exists so people like Grayson with AxD can see a treatment and eventual cure to this unrelenting disease. We’ll be hosting events to raise funds for research, using resources to help other families affected by the disease, and making it possible for others to get the expert care they need.
I’m so thankful for the many who’ve already joined us in our climb to a cure. You’ve cried with us, read our story, asked for updates. We are truly humbled and amazed at the community of people who’ve united around our smiley boy. We ask you to take action now as we take the next step in raising awareness and support. Continue to be part of this story. Sign up for our newsletter for updates. Show up. Pray for this work. Give. And bring your company, friends and families along. We can’t do this alone.
Ready to climb,