A Kenilworth schoolboy with severe epilepsy has been invited to be the mascot for a Kenilworth RFC’s last game of the season - all after they raised £2,300 to help him get cannabis treatment abroad.
Five-year-old Alfie Dingley will bring on the ball for Kenilworth’s match against Stoke RUFC on Saturday April 22, which his mother Hannah Deacon says he is ‘very excited’ about.
Alfie was asked to do so after the club raised more than £2,000 for the family’s charity ‘Alfie’s Hope’ through an auction and raffle at the club’s dinner on Wednesday April 5.
A lot of the money was raised after a signed England shirt and ball was auctioned off at the dinner, which was attended by international rugby referee Nigel Owens.
A further £300 was raised on the club’s ‘Pirate Tour’ for over-35s this weekend, which Alfie’s father Drew Dingley took part in.
Hannah said the club had heard about the family’s situation through Drew, who used to play for the club’s first team before Alfie’s illness. Drew is self-employed, and Hannah has to stay at home to look after Alfie, so if Drew became injured through rugby and could not work the family would not have any income.
She added: “Drew’s friends with a lot of the people who still run the club. They know what our family are going through and were trying to raise money for us.
“They’ve really come together to help and support us, and that’s just a lovely feeling. It’s nice just to feel like they care about us.”
Thorn’s Infant School pupil Alfie has a rare and severe form of epilepsy called PCDH19, which causes him to suffer seizures in intense ‘clusters’. These are not stopped by usual anti-epilepsy drugs.
Steroids can help stop Alfie’s seizures for a brief time, but their use can cause serious side-effects.
And once Alfie’s family went public about his condition, veterans’ captain of Kenilworth RFC Dom Carrick, a good friend of Drew’s, said everyone at the club felt it was ‘time to mobilise’ and help them raise money.
He said: “Everyone at the club was aware of the situation, but it was only since January we realised quite how serious it was.
“I just asked the question whether Alfie’s family would like to be the beneficiary of the dinner, and it went from there.
“The raffle bucket was overflowing with money by the end of the night. I think we were quite staggered by how much was raised.”
Alfie’s condition led Hannah to research how medical cannabis, which is illegal in the UK, could be used to help treat him. In a previous interview, Hannah said: “It’s just gone from bad to worse - he’s in hospital every week now.
“That’s why I decided to research medical cannabis. I’ve said to my doctor if he’s on medication that works but has side effects then we have to suck it up and deal with it, but nothing’s worked.
“In rare cases medical cannabis can stop the seizures but most of the time it reduces their severity and impact.”
Hannah is hoping to raise money so she can take Alfie to a doctor abroad who will treat him with medical cannabis.
Anyone wishing to help can donate at Alfie’s Just Giving page.