Charity continues raising vital funds for research

A CHARITY founded to help two young locals with a rare disorder is hosting a charity morning.

Leo’s Mission has spent the past few years raising funds to find treatments for the incredibly rare X-Linked Hypophosphataemia (XLH), a genetic condition that effects bone and teeth development.

Around four in 100,000 people born suffer with it.

Unfortunately for their family, eightyear-old Leo and his six-year-old sister Eva Sharp, as well as their mother Robyn, all have this little-researched condition.

Chris Horton, Leo’s grandfather and one of the charity’s administrators, told the Chronicle: “Both my grandchildren have a drug injection every week to help with their condition. At a certain age though, this stops working.

“In America they have a drug that works on adults, but the problem over here is that it’s too expensive.

“Their mum is in her 30s and currently wheelchair-bound, so can’t even do what most parents would with their kids like pick them up or run around in the park.

“All the money we raise goes to XLH UK to try and make things better.”

Both children have previously had dangerous cranial surgery due to the condition causing pressure on the brain, an experience which Chris describes as being ‘like Russian roulette’.

With regular fundraising activities taking place, the family have shown an unwavering dedication to finding a solution to this problem.

Now, they are preparing a coffee morning for December 16 at St Mary’s Church to tackle the cold weather and continue their important mission.

“It’s not an ordinary coffee morning,” Chris added. “We’ll have warm food like bacon sandwiches and an all-day breakfast – whatever people want.

“The mayor will also be showing up, he’s been a big supporter of us.”