Exclusive: North East student could be blind by Christmas with rare eye condition

Jack Binnie and his family are trying to raise £20,000 for treatment

Author: Joe OdberPublished 2nd Dec 2022

A first-year student from Aberdeenshire is trying to raise £20,000 to go to Berlin to get treatment on a rare eye condition that could mean he's blind by Christmas.

Jack Binnie has been diagnosed with retinitis pigmentosa, which can cause a rapid loss of vision.

Jack, 20, has lost 70% of his vision in the last month and a half.

A life-changing six weeks

Speaking exclusively to MFR News, Dad, Lee Binnie, said it's been difficult time for the family.

"It's been tough to realise that, without treatment, your son's going to go blind.

"Over the past six weeks, Jack's lost all his peripheral vision and he's got no night vision at all, and it's only getting worse.

"There's 12 conditions for this disease and Jack's got the worst one. It's very, very aggressive."

'It's just taken everything'

Jack is studying law at university, something he's been working towards for a number of years.

"I did a year of business management at college and then I did my HND legal services diploma. I had my graduation for that at the start of October.

"The I went on to study for my honours, which would have taken four years, but it's going to take a little bit longer now."

Whilst studying, Jack was also a Supervisor at The Hilton Hotel and worked towards getting a new car.

But he's no longer able to drive it, nor is he able to work.

"I have to adjust brightness on things and it's hard to look at things because they're quite blurry.

"Then I've had to suspend my university until next year, hoping I can go back next year.

"It's just kind of taken everything. It's went from me being full steam ahead with work, university and building this life that I wanted to.

"It's all just disappeared, in a blink."

A glimmer of hope

There's no known cure for the disease, but treatment is available in Berlin.

"The treatments that they're offering, if successful, would last between a year and three years and then after that, when it starts deteriorating again, I have to go and get a final treatment", said Jack, from Kintore.

"It will kind of pause the condition, and then it shouldn't get any worse."

His Dad added, "we've found this clinic ourselves.

"We've started a GoFundMe page and hopefully we can get to Berlin as soon as next week and get this treatment, because his condition is worsening all the time.

"We want him to see Christmas and see his 21st birthday which is the 28th of December."

Raising awareness

A fundraising event is taking place in February to ensure Jack can continue with his treatment.

But Pauline, Jack's Mum, wants more people to know about retinitis pigmentosa, which is estimated to affect one in 3,500-4,000 people worldwide.

"We would like to raise awareness of the condition, because I'd never heard of it before.

"Now I feel like it's just moved into my home and taken over."

Jack's fundraising page can be found here**.**

Hear all the latest news from across the North of Scotland on MFR. Listen on FM, via our Rayo app, DAB, or smart speaker.