See landmarks turn orange to shine a light on Batten Disease for South Shields boy with rare condition
A South Shields family has thanked people for their support as local landmarks turned orange to shine a light on their son’s rare condition.
Gateshead’s Millennium Bridge and South Shields Town Hall glowed orange on Tuesday, June 9 for International Batten Disease Awareness Day, in support of four-year-old James Young from Whiteleas.
There is currently no cure for the condition of the nervous system, which will affect his memory and ability to walk and talk.
Doctors warned that without treatment he may not live to see his 13th birthday.
James now travels to London’s Great Ormond Street Hospital every two weeks for enzyme replacement therapy to manage his symptoms.
Since beginning the treatment James – who at one point was having up to 50 seizures a day – has responded well and is now back on his feet and able to use a walker to get around.
His parents, Diana, 29 and Dean Young, 33, have both given up work to become his full-time carers and have committed to raising awareness of Batten Disease, which they say they had never heard of before they received the devastating diagnosis.
The family were in London for his treatment on Tuesday, while back at home friends and neighbours sent them photos of the lit-up landmarks and showed their support by decorating their own houses with orange banners and displays dedicated to James.
“It was brilliant and really special to know that it was all in honour of James,” said Dean.
“We had so many positive reactions from people, our phone never stopped ringing all day and we’ve had hundreds of messages.”
Diana added: “We would just like to thank everyone who has supported our family and the BDFA (Batten Disease Family Association) the support has been amazing. We will keep trying to raise awareness and keep everyone updated on James, as there has been a lot of people messaging about his progress.
“James is responding to the treatment really well and hopefully he will keep getting better.”