Scottish landmarks to light up orange to raise awareness on rare disease

Various Scottish landmarks are being lit up orange tonight to raise awareness for a rare incurable disease.

Edinburgh Castle, the SSE Hydro in Glasgow, Discovery Point in Dundee and Ness Bridge in Inverness are just some of the buildings taking part in International Batten Disease Awareness Day.

The degenerative disease effects roughly 100 - 150 people in the UK, robbing their ability to move, speak, see and function.

Seven-year-old Reece Mitchell, from North Kessock, just outside Inverness, was diagnosed with Batten Disease in 2018.

His mum Donna tells us what it's like to be a parent of a child with the condition.

She said: "It's just horrific to watch your once healthy child, lose all their acquired skills.

"To go from being able to walk and talk to being completely dependant on you.

"All the subtle changes are every bit as difficult to deal with as the big changes.

"Reece used to laugh and giggle a lot, we don't see that as often now.

"Most people wouldn't even notice these things, but as a parent you do."

Donna hopes raising awareness could help children who get the illness receive the correct support as soon as possible.

She added: "With better awareness comes quicker diagnosis.

"It can be a long journey to getting the right diagnosis because it's so unheard of.

"Obviously with a quicker diagnosis, your child gets the better care and support they require.

"We're encouraging everybody if they've got something orange to wear and to post on social media with #battenday21.

"It can be anything, you could even get your kids to draw a poster to stick on the window.

Reece recently received a letter from First Minister Nicola Sturgeon, saying she was "very proud" of him.

The Scottish Government also confirmed two of their Edinburgh buildings will be lit up orange.

A spokesperson said: "We are committed to improving the lives of all people in Scotland with rare diseases, including children like Reece.

"We have continued to collaborate with UK counterparts to co-develop the UK Rare Disease Framework, published on 9 January 2021 to ensure patients can benefit from safe, effective, person-centred healthcare in Scotland. A new Scotland-specific Action Plan is being developed to take forward the Framework priorities.

"We are grateful to Reece and his mum for their help in raising awareness of Batten Disease and both Scottish Government buildings at St Andrews House and Victoria Quay in Edinburgh will be lit up orange to mark International Batten Disease Awareness Day.”

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