“Grayson lights up a room. I don’t know that there’s anybody who wakes up happier than Grayson. He’s just the happiest little guy and always full of joy. And he’s working all day. He doesn’t necessarily know it, but he’s working and being evaluated and measured all day long. I don’t know a 8-year-old that works harder than him.” -Laura Ledbetter

It was a complicated pregnancy. At 20-weeks, Josh and Laura Ledbetter weren't sure they were even going to meet their second son. Then, summer came, and so did Grayson: a smiling, healthy boy who would grow to love M&M's and Elmo, but suffer from clear developmental delays.

While Grayson would continue to grow stronger and make unexpected strides, he still struggled to keep up with his peers. At 4 years old, Grayson had his first seizure, brought on by a high fever. A CT scan found a brain abnormality and a follow-up MRI was ordered, but the results left local doctors puzzled. The Ledbetter's took Grayson to the Children's Hospital of Philadelphia (CHOP).

"For the Ledbetters, we knew the diagnosis before the family did, so we were prepared ahead of time, having reviewed the MRI and clinical history. We didn't have genetic testing, but we were fairly certain that was what Grayson had. So I went and introduced myself to the family that day. We try to counsel patients as close to their diagnosis as possible." -Amy Waldman, CHOP

When Grayson was diagnosed with Alexander Disease in 2017, it was devastating for the family. But it wasn't the first time - or last time - he would overcome odds and inspire those around him with his infectious joy and love. The Ledbetter's enrolled Grayson in CHOP's Natural History Study, and went on to form their own Foundation in his name: Grayson's Ladder.

Grayson is 8 years old and doesn't understand what Alexander Disease is yet, but Josh and Laura do. They continue to have hope for a treatment and eventual cure. From their website: Grayson’s Ladder strives toward that end through prayer, community, funding and support for families affected by this disease and other forms of Leukodystrophy. This hope stems from our faith, but also from knowing there are medical professionals who wake up thinking about AxD, and who are currently developing a drug with the potential to treat it. With research and funding, this drug could be the difference for people like Grayson, and we are determined to be a catalyst for that cause." The Ledbetter's bring this same faith and energy to End AxD.

If you’re lucky enough to meet Grayson, he’ll give you a big smile and say, “Hey, dude!”

So, let’s End AxD… Dudes.