A COMMUNITY has pulled together to help a Deeside boy who was given just 11-years to live.

A group of friends decided to cycle from Connah's Quay to Anglesey over the weekend to raise funds for 9-year-old Leighton Roberts from Ewloe.

Leighton was born with Lissencephaly (Smooth Brain), which is an extremely rare and untreatable condition which has a limited life span of approximately 11 years.

Due to his condition, Leighton is left visually impaired, has severe epilepsy which has often left him having 50 seizures a day and is unable to walk, talk or eat.

All medication, water, and food goes through a tube in his stomach. He is wheelchair bound and has no head or muscle control.

Scott Clarke said himself and a group of friends wanted to raise £6,000 to help this 'amazing family'.

Mum Linzi said the family was 'overwhelmed' with the donations and support.

The Leader:

She said: "We are truly overwhelmed by the kindness and determination of them guys, they did amazing and smashed it. Leighton is a lucky boy and all donations are such a huge help and the generosity of everyone in such hard times is amazing and we could never say thank you enough.

"When your child is diagnosed with life limiting condition, life becomes extremely hard and the overwhelming worry is constant to keep Leighton well and out of hospital. However when a world wide pandemic is thrown in that just makes life 100 per cent harder and the worry of him catching something is unbelievably too much.

"So when Scott and his team raised this money completing their amazing cycle ride suddenly life is made just that much easier, to be able to get him the ceiling hoisting to get him from his bed to a bath is such a huge difference and help and the donations are there for medical equipment and whatever he needs to make his life that much more comfortable.

"We thank you all so so much."

The Leader:

Scott said he aims to raise funds for a different cause every year, and after meeting Leighton's mum in December last year, he knew he wanted to help.

He told the Leader: "He is a most amazing little fighter and his family love him dearly. His family care for him 100 per cent and have adapted their home to make his life as comfortable as possible.

"We have built a changing/shower/bath area within his bedroom. We have purchased all of the specialist disability equipment and other required items and converted part of his room to include a bath, shower and wash area.

"All of the building work was carried out by HW Maintenance and Building for free. They heard what we were doing and offered their service. Prior to the work being carried, Leighton’s family would have to lift Leighton out of bed, put him into his wheelchair, then take him to his lift and downstairs into the garage which had been changed into a small wash room.

"This would have been at all times of the day and night and took a long time. Now they can hoist Leighton out of his bed with the ceiling hoist, manoeuvre him the bath/shower, place him on the specialist support table and wash him.

"This takes a lot less time and is less disruptive. His family have said it’s been a god send."

The Leader:

The group was originally going to cycle through England to the West coast to the East coast, but had to change their plans due to the current pandemic.

Scott added: "Due to COVID we have had to change our ride, we were meant to cycle the coast to coast In May but now cycled to Anglesey and back which is 120 miles.

"We have has some amazing donations from Kingspan, Clwyd Tool & Die, HRGO and large donations from individuals who have been touched by what we have set out to achieve.

"It is especially touching because of the times we are in but shows how people pull tighter to help those less fortunate than themselves."

Scott said he was 'touched' by all of the kind donations which enabled the group to surpass their 6k target.

He said: "We had an amazing day, we rode for over seven hours and covered 120 miles from Connah's Quay to Anglesey and back and raised £6,000 for a special boy Leighton. It was a tough ride due to the heat throughout the day and the wind on the way back home.

"Thanks to everyone who has donated and the support throughout the day. Thanks also to everyone who rode in tough conditions and helped raise the funds, although I have to say some of the scenery along the way is truly beautiful and well worth pushing yourself to see what Wales has to offer."

Anyone wishing to donate can still do so online at https://www.gofundme.com/f/Lets-help-Leighton

The Leader: