Sheffield family plead for help after drug trial for boy, 11, is abruptly stopped

Harley Bond, 11, has relearned to talk after spending four years on a drug trial for tralesinidase alfa, which treats Sanfilippo syndrome. Photograph: Christopher Thomond/The Guardian

The family of a boy with a rare form of childhood dementia said he had been given “a death sentence” after his treatment was withdrawn amid a collapsed takeover deal.

Harley Bond, 11, was diagnosed seven years ago with a condition called Sanfilippo syndrome, which gradually limits a child’s ability to walk, talk and eat.