His illness has deprived him of the ability to see and walk, but for Ollie Caroll, the most heartbreaking thing it has taken from him is his ability to sing and dance.
The six-year-old from England spent much of his early life singing along to his favourite singer Ed Sheeran, but in February 2015 he was diagnosed with Batten disease, a rare genetic condition that causes 'progressive neurological impairment' and is always fatal. The once active, vibrant child gradually lost the physical function to do the things he loved most, all except the ability to hear.
His family says Ed Sheeran's music has helped Ollie immeasurably as his health has deteriorated.
"The power of Ed's voice has pulled Ollie through the hardest and darkest of times," his mother Lucy told Macclesfield Express.
And now Ollie has achieved his greatest wish; to meet the star, who has managed to remain down-to-earth and approachable despite his mammoth global success as a singer and song writer.
The family created a Facebook page called Ollie's Army Battling Against Battens and launched a campaign so that Ollie might be in with a chance to meet his idol.
The post read, "Since Ollie was a tiny toddler, he was singing and dancing to Ed Sheeran's songs around the house and every time we got in the car! Ollie can't sing anymore, Batten Disease has taken that from him. But he still listens to Ed Sheeran all the time... It would be incredible if we could tick off this part of Ollie's wish list."
Sure enough, Ed found out about it and invited the entire family to see his gig in Manchester, meeting them before he went on stage. Lucy says Ollie reacted the second he heard Ed's voice.
"As soon as Ed walked into the room and spoke Ollie's eyes lit up and a smile spread across his face. Ed spent time with Ollie and gave him the biggest of cuddles."