Meet Asa

Asa has been the sweetest, happiest little boy from the very start. Around six months old, we began noticing developmental delays. Soon after, Asa experienced seizures that led us down a long road of testing. Genetic testing ultimately confirmed a rare diagnosis, Alexander disease, which changed our lives in an instant.

While this journey has brought uncertainty, it has also revealed incredible strength and hope. We are beyond grateful for Asa’s medical team and for the opportunity to participate in ongoing research, which gives us hope for his future and for other families walking this same path.

Despite the challenges he faces, Asa is full of joy. He has the biggest smile that lights up every room. He loves Elmo, playing the guitar, and being outside. You will often find him throwing a ball or happily munching on “Dots” pretzels, his favorite snack.

With weekly speech and physical therapy, his determination shines. He began walking at two and a half years old, a moment we will never forget.

Alexander disease is part of Asa’s story, but it does not define him. He is joy. He is strength. He is perseverance. Every day, he reminds us what it means to fight hard and celebrate every victory, big or small.