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“Our Superhero Maddox brings joy to everyone he meets. His resilience is inspiring, his laughter is contagious, and his gentle heart makes him extremely lovable.”

A message from Maddox’s family:

Maddox was diagnosed with KAND November of 2018 and is still the only known carrier of his variant. At first glance, you would never know that there’s anything wrong with him, but as you know, looks can be deceiving.

We feel very fortunate that Maddox’s variant is fairly mild. He has autism, is behind with his fine motor skills, has a weak core, and requires AFOs to support his legs and feet. Along with his therapists, we’re continually working with him through exercises and play based activities to help strengthen his core and teach him how to safely fall. We’ve read many stories of people who either didn’t know that they had KAND or had a mild version as a child and when they reached their teens and twenties, their conditions worsened. We pray and hope that his condition doesn’t worsen, but only time will tell. In the meantime, we’ll move forward with our lives and allow him to live his best life to the best of our abilities. We are so thankful to have an amazing support system through his medical team, school, and family & friends.

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