THE family and friends of an 11-year-old boy from York with an extremely rare form of a life-limiting illness are fighting to raise awareness of the condition.

Bill Gornall, who lives in Holgate with dad, Sid, and siblings, Buddy, eight and Olive, five, was diagnosed in 2020 with mitochondrial disease MELAS, a rare disorder that begins in childhood and mostly affects the nervous system and muscles.

Mito - as his family call it - is a degenerative condition affecting the mitochondria in your cells which provide 90 per cent of the energy for them to perform properly. If the mitochondria are unable to produce energy for the cell it dies and the organ the cell is supporting can fail.

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Sid, a designer for Thor's Bars, said: "Bill is a lovely, warm little boy, he's really positive and given what he's had to deal with it's incredible. He's an inspiration.

"He knows it's progressive and he knows it's not going to get better, but the way he handles it blows everybody away."

Sid explained that Bill, who is in Year 6 at Acomb primary and is due to go to Manor CE in September, is now struggling to walk any distance and now needs a wheelchair to get around.

York Press: Bill and Buddy GornallBill and Buddy Gornall (Image: Sid Gornall)

"Until Bill was six or seven he was a healthy little boy, but we noticed something was wrong when he started sports and PE at school. His energy levels just kept running out. We're quite an an active family and he'd always been quite active, but he started complaining about getting pains in his legs and almost passing out," said Sid.

There followed two years of exploratory tests to try and find out issue and Bill was eventually diagnosed with a form of mitochondrial disease that the family believe only affects 17 people in the world.

Soon after diagnosis they were forwarded the details of The Lily Foundation, the UK's leading mitochondrial disease charity and the largest charitable funder of mitochondrial research in Europe. To date the family and their friends have raised more than £26,000.

Sid, who ran the London Marathon at the weekend - the latest of four fundraising marathon runs, said: "We are committed to raising as much money and awareness as we can of the condition and the work the foundation does. We believe that through awareness and knowledge comes hope. Hope that one day there will be a cure, hope that medicines will become available to extend Bill's time with us."

York Press: Bill and Sid Gornall at York MarathonBill and Sid Gornall at York Marathon (Image: Sid Gornall)

Jon Mooney, Sid's former work colleague and a family friend, is using his York-based coffee business, YO1 Coffee Co to launch Bill's Blend. 

Jon said: "I wanted to help, we came up with the idea and Bill himself has taste-tested Bill's Blend Volume 1 and given it the thumbs up.

"From the sale of each bag of Bill's Blend coffee we sell 100 per cent of the profits is donated to the cause and we have got other York businesses to help, one being Kennedy's Bar in York where Sid and I worked together back in 2001 and I worked for five years as a manager. We are both friends with Karen Waugh, the owner and she's agreed to donate 10p from the sale of every cup and to stock Bill's Blend for sale and Dusk in New Street is also looking at coming on board."

Bill's Blend is also available priced £8.50 from

To follow the family's story further go to their JustGiving page here and on Instagram @bills_mito_battle 

York Press: Olive, Sid and Bill Gornall with Jon Mooney and Bill's Blend outside Kennedy's Bar in YorkOlive, Sid and Bill Gornall with Jon Mooney and Bill's Blend outside Kennedy's Bar in York (Image: Supplied)