Amputee to take on charity grueller for girl with Cockayne Syndrome

Carl Eaton, 58, from Up Holland, raising money for Lily-Mae Esfangiary who has rare illness

Thursday, 24th June 2021, 7:00 am
Carl Eaton with Lily-Mae

A dad-of-two, who has spina bifida and uses a prosthetic leg, will test his endurance when he takes part in a Tough Mudder challenge.

Carl Eaton, 58, from Up Holland, was born with the condition which causes spinal defects and had to have one of his legs amputated 25 years ago.

The care service team leader has spent the past 15 years in a wheelchair and battles pain on a daily basis.

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Carl Eaton will be taking on the Tough Mudder challenge

However nothing will stop Carl who now plans to take on the gruelling feat which will consist of a three-mile course and 13 obstacles.

Carl, who will wear a hospital gown and be carried on a stretcher, will be helped around the course by his wife, son and friends.

His efforts will all be for Lily-Mae Esfangiary, from Up Holland, who suffers from Cockayne syndrome, an incredibly rare illness that affects one in 500,000 babies.

She is often mistaken for a baby despite actually being four years old - and the rare disorder is characterised by small stature, microcephaly (small head), developmental delays and premature aging.

Cockayne syndrome can also be difficult to diagnose early on, as birth weight and head size are often normal, as is a child’s early development - so much so that mum Sally was only told the news when she was one.

Speaking with passion, Carl said that raising money for Lily Mae and the Amy and Friends charity which supports individuals with Cockayne, was “hugely important”.

He said: “It’s massive. Lily wants a holiday in the UK as she can’t go abroad as she would be severely affected by the sunlight.

“I met up with Lily a few weeks ago and it broke my heart.

“Her condition is a vile disease and I just want to raise enough money and above all awareness for Lily and the charity which supports children affected like her.

“So this challenge is hugely important to me.”

And Carl, who is a team leader for a care service is no stranger to raising money having raised £70,000 over the years for various charities.

In 2017, he took on the Greater Manchester marathon in a non-modified wheelchair, while he has abseiled off Spinnaker Tower in Portsmouth, and last year even let a tarantula crawl over his face.

So far, he has already raised more than £2,500 on a crowdfunding page he has set up for the Tough Mudder Challenge.

Away from raising money for charity, Carl runs ‘Skem Men-Aces’, a football team solely for adults with varying degrees of disabilities based in Skelmersdale.

They have been in existence since 2009 and continue to grow.

Reflecting on the challenge ahead, Carl said: “I’m going to be carried on a stretcher and I will wear hospital gowns for a laugh.

“I’ll be turfed out onto the mud when we get near an obstacle.

“I won’t be in my wheelchair and I don’t want the prosthetic leg either, as it will be more of a hindrance.

“There will be hundreds of people involved so I just want to get on with it.”

For moral support, Carl’s son, also Carl, will be coming over from Belfast, while his wife Mim will help.

A friend called Kyle Herbert and Ste Rimmer, a member of the football team who has one hand, will also help out.

Carl said: “I’ve worked all my adult life.

“It’s difficult living with my condition but I just get on with it and battle through the pain on a daily basis. Nothing will stop me.

He added: “I’m looking forward to the challenge and want to thank everyone for their support.”

And one of Lily-Mae’s family also wanted to thank Carl for his efforts.

Grandmother Sue Hodson said: “We are really grateful to Carl.

“We’d like to thank him for what he’s doing to raise money and awareness.”

To donate money to Carl visit his Just Giving page:

The Tough Mudder challenge takes place on Saturday, September 4, at Cholmondeley Castle, Malpas, Cheshire.

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