See landmarks turn orange to shine a light on Batten Disease for South Shields boy with rare condition

Gateshead Millennium Bridge glows orange on International Batten Disease Awareness Day. Photo credit: Stephen Moran, STM Photography.

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.

James - who is thought to be the only child in South Shields with Batten Disease – was diagnosed in January 2020.

There is currently no cure for the condition of the nervous system, which will affect his memory and ability to walk and talk.

James' aunt and uncle, Natalie Brown and Craig Holder with cousins Liam and Lainey Holder.

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.

Diana and Dean Young with Gracie, 10 and James, 4 on International Batten Disease Awareness Day.

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.

South Shields Town Hall iluminated orange in support of Batten Disease.

“James is responding to the treatment really well and hopefully he will keep getting better.”

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Landmarks lit up for to raise awareness of Batten Disease.

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