When Eamon Marshall was born there was no hint of the profound disabilities that would confine him to a wheelchair unable to walk, talk or understand.

But a nagging "mother's intuition" came to a head when Eamon, now 16, was diagnosed with tuberous sclerosis, cerebral palsy, severe epilepsy, visual impairment and intellectual disability at six months old.

The crushing blow left his Napier parents, Glenn and Fran Marshall, reeling.

"I still remember it like it was yesterday," his father says. "Fran just curled up in a ball, gasping for air. It was like someone had hit us with a sledgehammer."

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A timeline of complaints