Brayden was born in March 2015 — a boy who would come to embody resilience in its fullest sense. From his earliest months, something was quietly different. Ear infections arrived repeatedly, requiring tubes before his first birthday. When he began walking at 17 months, falls came frequently, and his family sensed that the clumsiness ran deeper than childhood coordination.
By ages 2 and 3, tremors emerged without warning. Then came the moment that changed everything: a sudden inability to walk, a hospitalization, and the beginning of extensive testing. Muscle biopsy and genetic analysis with a neurological specialist in Rochester, NY led to the diagnosis on August 10, 2018 — SMA-PME, confirmed at age 3.
"Both conditions — SMA-PME and Farber disease — stem from an identical ASAH1 gene mutation. Two diagnoses, one source, and a family determined to fight both."
The following year brought a second diagnosis: Farber disease. Skin nodules appeared, requiring biopsies and consultations with international specialists in France and Canada. Throat nodules followed. His first wheelchair arrived. Through it all, Brayden kept showing up — for his family, for himself, for the game of baseball he loves with his whole heart.
Seizures began around ages 5 and 6. By ages 6 and 7, respiratory infections had escalated to aspiration pneumonia, necessitating a feeding tube. Daily seizures and complete wheelchair dependence followed. Each setback met by a spirit that refuses to be defined by it.
Brayden's passion for baseball is more than a hobby — it is a declaration. In the dugout, on the field, cheering from the sideline, he is a team player in every sense: steady, loyal, and full of fight. His story is a reminder of why this research cannot wait.
Multiple ear infections from birth; ear tubes placed before age 1.
Begins walking, but with frequent falls and persistent clumsiness.
Tremors emerge; hospitalized for sudden inability to walk; extensive testing begins.
SMA-PME confirmed after muscle biopsy and genetic testing with neurological specialist in Rochester, NY.
Skin nodules appear (Farber disease hallmark); biopsy and overseas consultation with specialists in France and Canada.
Farber disease confirmed — both conditions from the same ASAH1 gene mutation.
Throat nodules develop; receives first wheelchair.
Seizures begin.
Respiratory infections escalate to aspiration pneumonia; feeding tube placed.
Daily seizures; becomes completely wheelchair-dependent.
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