Devoted sister's challenge to make memories with little brother as he battles rare condition with no cure

A devoted sister is taking on a cycling challenge to raise funds so that she can make as memories as possible with her little brother as he battles a rare condition with no cure.

Gracie Young, 10, will cycle five miles from Latimer’s Seafood in Whitburn to South Shields’ Amphitheatre on Sunday, June 13, in an effort to raise £1,000 to support her brother, James Young, who has Batten Disease.

James, five, from Whiteleas, was diagnosed in January 2020 with the rare condition of the nervous system, which will affect his memory and ability to walk and talk.

There is currently no cure for the disease, but, in an effort to manage his symptoms, James undergoes enzyme replacement therapy treatment at London’s Great Ormond Street Hospital every two weeks.

Gracie Young with brother James Young.

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Parents Dean, 34, and Diana, 30, who travel with James for his treatment, said they ‘couldn’t be prouder’ of their two children.

"Gracie is absolutely brilliant with James and she has wanted to do something for him for such a long time,” Diana said.

Gracie, who goes out on her bike every week with grandad Sid Ghanem to train for the event, will be joined by her friends at various points along the way on the day of the challenge.

Gracie Young will cycle five miles from Whitburn to South Shields to raise funds for her brother James who has Battens Disease.

Supporters will then meet the group as they finish their cycle at South Shields’ Amphitheatre to celebrate the achievement, should Covid-19 restrictions allow.

And the Covid pandemic has made already difficult circumstances even harder for the family, who have had to spend the majority of the last year in isolation to protect James.

Sadly, the Keelman's Way School pupil’s condition has deteriorated during this time, without being able to have access to the likes of physiotherapy because of restrictions.

James, who now relies on his wheelchair to get around, also had to cope with long car journeys to London for his treatment when train travel was affected by the pandemic.

Dean and Diana Young on their wedding day with James and sister Gracie, 10.

Diana said: "We’ve been adapting the house for James over the last year, but with lockdown we’ve realized how much time we’ve missed in making memories as a family – especially with James deteriorating – so we’d love to be able to make as many memories as we can.”

Gracie’s fundraiser which has already raised around £800 through donations.

"She is doing really well with it,” Diana said.

"She hit her £500 target in just a week so we set a bigger one. She is over the moon.”

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