Rowan was diagnosed with Infantile Neuroaxonal Dystrophy on November 13, 2022; the news came the same day she turned 19 months old.

Our research leads us to believe that the majority of Rowan’s skills will be gone within 40 months of symptom onset, but we are in disagreement regarding when that occurred. It could be as early as two months or as late as 10 months of age. Regardless, Rowan’s motor deficits and impending loss of cognitive function make it clear that we are already in the midst of a battle against time. Whenever Rowan catches a cold, we experience a preview of what’s to come: widespread skill regression, dementia, and total reliance on others.

Rowan currently suffers from multiple vision disorders including oculomotor ataxia and strabismus, two sleep disorders, and a swallowing disorder. She has never crawled on hands-and-knees, pulled to stand independently, or walked without assistance. She loves to move, but her gross motor movements are typically unproductive. Rowan lost the ability to push to sit shortly after “motor-mapping” it constantly for a month; as with many abilities that seem to fade away as soon as she gains them, we are fighting to help her find that skill again.

Rowan regularly works closely with three physical therapists, a feeding and speech specialist, a speech therapist who specializes in assistive technology, and an occupational therapist.