Mold sixth-former to take on TV's Rickshaw Challenge to raise awareness of sister's rare ageing illness

Reporter:

Susan Perry

BBC’s The One Show’s Rickshaw Challenge is set to return to our screens with a new team of riders and route, which was revealed live on the programme.

This year’s team includes Ben Hughes, 16, a sixth-former at Mold Alun and 18-year-old Sabah Jamil, who was supported by Mold-based Same but Different.

Now in its seventh year, this year’s Rickshaw team will pedal an epic 500-mile journey from The One Show studio in London to the River Clyde in Glasgow, all to raise money for BBC Children in Need.

Cycling alongside the team is The One Show’s Matt Baker, who will go on the road to offer support and advice throughout the journey, while co-host Alex Jones follows their every move – cheering the team on, live from the studio.

Ben’s older sister Amy, 27, has Cockayne Syndrome, a rare disorder which causes premature ageing.

Ben helps with her care and is part of the support group Amy and Friends, which also helps raise awareness of the condition and is why he was selected for the TV challenge which will be watched by millions of viewers.

His mother Jayne said: “Amy had to go to the USA to be diagnosed and while we were there we met other children with Amy’s illness and set up a support group.

“We have an annual conference, the next one is at Carden Park, where families and children from all over the world come together, and there is a siblings club – we’ve set one up in Rhyl, another one on the Wirral, and we would like to set one up in Mold.

“Ben has lived with Amy right through her illness and has experienced a lot of children passing away.

“Children in Need approached us as a charity to put children forward for the challenge and Ben was the one chosen from his age group.”

Jayne added that Ben was taking the challenge seriously, practising at school every day, and using the opportunity to spread awareness of his sister’s condition.

She said: “Ben’s been training every day at the school, as they have the leisure facilities next door and the gym.

“He has had a brilliant response from everyone at school so far.

“Ben’s relatively quiet and likes Amy to take the limelight, so yesterday [Wednesday, speaking on The One Show] it was great to see him get more confident.

“He was nervous about speaking about Amy’s condition because it makes him feel sad, but yesterday it was great to see him get more and more confident.

“Ben’s really looking forward to it now.”

Same but Different, a project receiving BBC Children in Need funding, uses the arts to raise awareness of the person behind disability or rare diseases.

Their latest project by photographer Ceridwen Hughes, called Rare Beauty, recreates every day scenes that people with rare diseases find themselves in, for example, having surgery, meeting the consultant or having treatment.

The juxtaposition is that whilst these settings by their very nature are usually sterile, uninviting locations, she has created a scene of beauty.

Ceridwen said: “We wanted to create something that encouraged people to want to know more and to find out about the people involved and their conditions.

“Despite one in 17 people being affected by a rare disease in the UK, awareness is limited. A photograph of someone in an operating theatre, for example, can be quite a scary image for some people to look at but by making it into a beautiful environment we hopefully encourage people to want to know more.

“Sabah is one of the young people to take part in this project and we are delighted she has been chosen to take part in the Rickshaw Challenge.

“Sabah is such an inspirational person and it has been a joy to work with her on the Rare Beauty Project. As part of the project I interviewed Sabah and asked her why she wanted to help raise awareness of her condition.

“She explained that getting a diagnosis can be really scary and you can feel alone and sad. Having role models in your life can help as they are like a beacon of light at a time when you really need support.

“Her words summed up how caring she is and despite all her challenges she just wants to help others.”

Email:

susan.perry@nwn.co.uk

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