Boy of 9 holds fundraising day at Hermitage School in Wapping for little sister born with liver disease
PUBLISHED: 14:00 27 July 2018
A big-hearted big brother who cares for his little sister with a rare disease persuaded his school in Wapping to hold a fundraising day for a charity that helps children with liver conditions.
Nine year-old Khalis Ahmed asked schoolmates and teachers at Hermitage Primary to help out and raised almost £500 for the Children’s Liver Disease Foundation.
His sister Alina Miah, now five, was born with the rare liver disease, biliary atresia, and had a transplant just before her first birthday—but needs drugs for the rest of her life, a heartache for their mum Natalie.
“She got her first infection a month later which recurred every two or three weeks,” Natalie told the East London Advertiser.
“It was terrible. Her blood was flowing backwards.
“But there is no cure for liver disease. The transplant just gives her a better chance of life, without so many complications. There’s a chance she’ll need another when she’s older, or even next year.
“You just have to deal with it—you can’t wonder about the next bad thing that’s going to happen. You have to get on with life.”
But Alina’s big brother Khalis wasn’t going to leave it at that—he got his school chums involved to give something back to the charity that supports his family.
A mix of sports events, a raffle, book, toy and cake sale and a smoothie stall fetched in an impressive £493.
Khalis explained why he did it: “I heard about what the charity does for children and could see how it helped my family, so I thought I could raise money for them to help more people.”
The Children’s Liver Disease Foundation is the only charity in Britain dedicated to fighting all childhood liver diseases, but has to rely almost entirely on voluntary donations. It doesn’t receive any NHS funding and relies completely on public support.
The foundation has 140 member charities spending £1.6bn a year on research in the UK. Its supporters pay for projects researching childhood liver disease, with £9 million raised since 1980, mostly donated by families and relatives like Khalis.
The research improves treatment as well as giving hope to children and their families.
Up to 20 children every week in Britain are diagnosed with a life-threatening disease. There is still no cure, says the trust. All children affected will require a lifetime of care with many needing transplants.