William Downes was diagnosed with childhood cerebral adrenoleukodystrophy in September of 2017. Family and friends have described Will as a vibrant, intelligent, loving, and kind-hearted boy who loves football and Manchester United.

Will was diagnosed too late for transplant and has fought ALD valiantly for over six years with his devoted parents Emma and Chris and his loving sister Ella by his side. The Downes family continue to be avid advocates for newborn screening and equity for rare disease treatment.