Alice lost her battle with mitochondrial disease in June last year, aged 14. The disease robs the body’s cells of their ability to make energy, causing organ failure. There is no cure.

Alice managed to pack quite a bit into her short life – visiting Uluru, running City2Surf races, backpacking around Asia with her family – and Henry is glad to have shared these memories with her.

‘‘It doesn’t equate to the pain, but it’s good that we have those memories and we can laugh about things,’’ the 13-year-old Smith’s Hill High School student said.

Now, he wants to help other children who suffer from the disease that took his sister.

Henry has organised a theatre sports night, where competing groups perform short, improvised skits, this Friday at his school to raise money for the Australian Mitochondrial Disease Foundation.

‘‘Because it was such a rare disease that not a lot of people have heard about it, to get the word out in a small group, it’s hopefully one step closer to them helping other children, and adults,’’ he said.

Henry approached a number of Illawarra business to get them to donate prizes for a silent auction and raffle. Silent auction prizes include a surfboard donated by DP Surfboards and two nights accommodation at the Sydney Boulevard Hotel.

The fund-raiser is on this Friday, November 8 at 6pm at Smith’s Hill High School. Tickets are $5 at the door. There will be snacks and drinks available for a gold coin donation.