"I FEEL very special that people care so much about me.”
Those were the words of 11-year-old Bill Gornall from Holgate in York after he got to meet the York Knights rugby players ahead of their game at the Community Stadium against London Broncos on Sunday, which Bill and his family will also be attending.
As The Press previously reported, Bill has an extremely rare form of the life-limiting illness mitochondrial disease MELAS, a rare disorder that begins in childhood and mostly affects the nervous system and muscles.
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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.
Bill, who goes to Acomb Primary School and lives with dad, Sid, and siblings, Buddy, eight and Olive, five, was diagnosed in 2020 and is now struggling to walk any distance and needs a wheelchair to get around.
The team at York RLFC got in touch following The Press article.
Matty Lewis, commercial manager, said: "When we saw The Press article, we really wanted to reach out and put a smile on Bill's face.
"At York RLFC we pride ourselves on doing the right thing, and we're privileged to be able to offer something unique.
"To get Bill and his family down to meet the Knights squad was an honour for us, and then to invite them to this Sunday's match made perfect sense.
"We take for granted the health of our own family sometimes, and to read about Bill's story it's natural to picture it being your loved one, and imagine the experiences you'd like them to have.
"The Rugby League community is a very special one, and we will always welcome Bill down to be a part of our family."
Sid said: "We were really pleased with the reaction of the players. They were so welcoming and so good with Bill, they all took time out to talk to him.
"We're really excited about the match on Sunday and there's a suggestion that Bill might be walking the ball out for the kick off.
"He took his signed ball into school today and it's on his shelf now."
And Bill himself said: "I feel very special that people care so much about me.”
Soon after diagnosis Bill's family 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.
Sid, a designer for Thor's Bars, will be undertaking the Action Challenge Lakeland Ultra on June 10 - an 100km loop of The Lakes.
He said: "I’m doing it as part of the ‘Team Bill’ Just Giving Page which currently sits at £26,244 for The Lily Foundation. I’m hoping to reach my minimum funding requirement of £595 before the end of the month. I did it last year in 24 hours and this year I'm aiming for 17 hours so the next few weeks is all about training."
Jon Mooney, Sid's former work colleague and a family friend, has also used his York-based coffee business, YO1 Coffee Co to launch Bill's Blend to raise money.
Bill's Blend is available priced £8.50 from YO1coffeeco.com
To follow the family's story further go to their JustGiving page here and on Instagram @bills_mito_battle
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