Devoted South Shields sister completes cycle challenge for brother battling Batten Disease, which has no cure
A schoolgirl is on a mission to make as many memories as possible with her little brother as he battles a rare condition with no cure.
Gracie Young, 10, has completed a five-mile bike ride from Latimer’s Seafood in Whitburn to South Shields’ Amphitheatre in an effort to support her younger brother, James Young, who has Batten Disease.
James, five, from Whiteleas, was diagnosed in January 2020 and the condition of the nervous system will affect his memory and ability to walk and talk.
There is currently no cure for Batten Disease, but, in an effort to manage his symptoms, he undergoes enzyme replacement therapy treatment at London’s Great Ormond Street Hospital every two weeks.
Devoted sister, Gracie, completed her cycle challenge on June 13, raising more than £3,000 so that the family can enjoy as much time as they can together.
Parents Dean, 34, and Diana, 30, who travel with James for his treatment, said they were so proud of Gracie’s efforts.
Mum Diana said: “We’re proud beyond words for what she has done for her brother.”
Gracie’s school, Ashley Primary School, in South Shields, also showed their support for the family, raising more than £1,000 by holding a non-uniform day and a raffle.
Mum Diana added: “The support from her family, friends and school has been absolutely amazing.
"She’s had lovely messages sent through to say how well she has done, we will be forever grateful to the people who continue to support James and our family.”
The covid pandemic has made already difficult circumstances even harder for James’s 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.
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.”