Big sister is helping to make memories for James
MAKING UP FOR A ‘LOST YEAR’
‘‘ James has been shielding through most of it and he’s sadly lost the ability to walk now, he’s in a wheelchair all the time.
A SCHOOLGIRL is fundraising to make memories with her little brother after their family “lost a year” in lockdown.
South Shields youngster James Young has Batten’s disease – a rare condition that leaves sufferers unlikely to live into their teens.
His parents Dean and Diana were devastated when their son started regressing at the age of two – becoming wobbly on his feet and losing the little speech he had.
The diagnosis did not come until two years later, changing the family’s lives forever.
Until a few years ago, with no treatment available for Batten’s, the condition was effectively a death sentence.
But in September 2019 the NHS announced that a groundbreaking treatment that slows the symptoms down would be available for children in the UK – following a campaign spearheaded by Throckley couple Gail and Matthew Rich.
Dean and Diana knew instantly they had to give James the chance to have the treatment – but currently it is only available at London’s Great Ormond Street Hospital.
The demands of taking fiveyear-old James across the country for treatment at least every two weeks mean that the pair both had to quit their jobs.
They started fundraising to pay for travel expenses while James has his treatment, and to make memories as a family.
But when the Covid-19 pandemic hit, James had to start shielding – meaning he spent more than a year either at home or travelling to the hospital for treatment.
Successive lockdowns have left the family unable to fundraise – but as the country starts to reopen, James’ doting big sister Gracie has decided to take on her own charity challenge. The 10-year-old will be cycling five miles from Latimers in Seaburn to the amphitheatre in South Shields on June 13, supported by some of her friends.
Diana said: “We’re trying to make as many memories as possible because we’ve lost over a year with lockdown.
“James has been shielding through most of it and he’s sadly lost the ability to walk now, he’s in a wheelchair all the time.
“I think lockdown has had a big part in how much he’s regressed because he hasn’t been able to do any activities, he’s stuck in the house a lot.
“Thankfully he’s back at school now, which for James is a massive encouragement – he tends to join in a lot more.
“The treatment is helping and he’s starting to stabilise, so we’ve got our fingers crossed he’ll start learning things again.”
The family have booked a trip to the Lake District so James, who is a big Peter Rabbit fan, can go to The World of Beatrix Potter.
Diana said: “This year we’re hoping to get away a couple of times.
“He loves anything to do with dinosaurs, and Peppa Pig, so it would be good to take him to Peppa Pig world.”
She added: “Gracie has days where she struggles, but she helps out with James all the time.”
To donate to Gracie’s appeal go to https://www.justgiving. com/crowdfunding/dianayoung-1
MUM DIANA YOUNG