Family, friends remember young boy who passed away from rare syndrome last year

Small But Strong

PROVIDENCE, R.I. (WPRI) — Family and friends gathered at Roger Williams Park Sunday to celebrate what would have been Banner’s 6th birthday.

12 News first met Banner back in August 2019. At the time, his mother, Lyndsay Sears, was determined to make every day special for him, since they didn’t know how many he had left.

Small But Strong: Mother makes every moment count for son battling rare disease »

Banner sadly passed away last December from a rare syndrome called ROHHAD, which is an acronym for rapid-onset obesity (RO) with hypothalamic dysregulation (H), hypoventilation (H) and autonomic dysregulation (AD).

Sears told the crowd at Sunday’s gathering that they donated Banner’s organs and brain to ROHHAD research in the hopes that someday, there will be a cure.

In Banner’s memory, the group released dozens of blue and white biodegradable balloons into the sky.

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