Kynan is a beautiful, vibrant young boy who was diagnosed with childhood cerebral adrenoleukodystrophy at the age of eight on June 29th, 2022. His mother received a call after his MRI and was told bluntly that he had one to two years to live and that she should make memories with him.

Throughout his childhood, Kynan struggled with frequent illness, often requiring hospital admission and hydration due to undiagnosed adrenal insufficiency. In mid-2021, his teachers began to notice behavioral changes and regression in his reading and writing skills. He later started to experience difficulties with his vision. The primary care physician believed his difficulty to be related to possible ADHD or Autism, and the wait time for assessment by a pediatrician was eight months. Due to delays in receiving an MRI and diagnosis, Kynan has been identified too late for transplant.

Kynan is now ten years old and courageously continues to fight with his devoted family by his side. If newborn screening or more awareness had been available to this family, he could have been diagnosed in time to receive either a stem cell transplant or gene therapy.

In Kynan’s mother’s own words:

“To go through this is the cruelest journey. You are living a waiting for a time bomb to go off. The fear takes over your life, but praying Kynan is our miracle boy.”

Kynan and all children battling rare diseases deserve the chance to fight.