November 20, 2025 was the worst day of my life.

Not many of you know this, but my son Greyson has faced many health challenges. I have kept these matters private. Greyson was born healthy and had no complications until he was about 6 months old. Most of his challenges have been chronic ear infections (22 total now, even with ear tubes) and a lot difficulty gaining weight.

Around the age of 1, I was anticipating his first steps like all parents do. However, those independent steps never came. I was able to get Greyson seen regularly by a physical therapist as well as a speech therapist at 14 months old. Greyson could stand while holding onto a couch or wall, but he could never let go. I pushed and pushed for his doctors to have him seen by specialists because of this delay. His PCP finally referred us to a neurologist when Greyson was 18 months old. This specialist told me to “just give it time” and “let’s wait and see.” They never ordered any further testing and told me I was worrying too much.

My son has never walked.

I didn’t feel like my son and I were seen or even heard until he was 2.5 years old. I pleaded through tears with his third PCP to help me… help him. The day I took my son to Nemours Children’s Hospital, I was heard. A neurologist there ordered the MRI that should have been ordered long before. Greyson had to be sedated for the MRI, and the results showed that he has an abnormally small cerebrum. This is the part of the brain that controls motor skills and muscles throughout the entire body. That scan had both myself and the doctors believing he had cerebral palsy.

It wasn’t until Greyson’s Dad, Greyson, and I were genetically tested that we found his actual diagnosis.

My baby boy was diagnosed with Infantile Neuroaxonal Dystrophy (INAD). About 1 in a million children are diagnosed with this condition. It is ultra-rare, untreatable, rapidly progressive, life-altering, and fatal. Life expectancy is 5–10 years. INAD has been described as ALS and dementia combined. Greyson is likely to lose speech, motor skills, the ability to eat on his own, and eventually the ability to breathe on his own.

I was informed that Greyson’s variant of this disease has never been seen before.

Greyson also received a diagnosis of Cleidocranial Dysplasia, a rare bone disease.

Devastated. Heartbroken. Unfair. Words do not measure up to my feelings.

My baby boy is my world.

Telling family, telling our close friends, and telling his care circle are conversations I will remember forever. The pain.

This post—telling the world— pain.

Greyson sees a total of 17 doctors and specialists, with more to come.

There is a gene therapy currently waiting on FDA approval that may hopefully lead to a cure for INAD. This foundation could make a huge difference not only for our family, but for so many families if a cure is found.

Right now, Greyson is happily attending daycare—until the day comes when he cannot. When that day comes, I plan to stay home with him. This fundraiser may allow us to save funds for when I can no longer bring home income. Ideally I would also like to raise funding for Inadcure.org .

Funds raised may also help us purchase a larger vehicle to transport Greyson’s medical equipment. My current vehicle is not large enough for his needs. Greyson will need specialized equipment for daily life (gait trainer, wheelchair, stander, bathing chair, etc.)

Any and all donations are so appreciated—no matter the amount—and will help ease the financial burden during this unimaginably difficult time. Please pray for a miracle for our little family.

Thank you for taking the time to read this. Please share our story and spread INAD awareness.