Exclusive: Kintore student sets up foundation to save the sight of others with rare eye condition
Jack Binnie would have been blind by Christmas had it not been for treatment costing thousands of pounds
Last updated 30th Dec 2022
A 20-year-old from Kintore, who would have been blind by Christmas had it not been for treatment in Berlin, has set up a foundation to ensure others don't need to go through the trauma that he did.
After being diagnosed with an aggressive form of retinitis pigmentosa (RP), Jack Binnie was told that there was no cure and he'd be forced to lose his vision.
But after searching for options online, his family found a treatment facility in Berlin.
READ MORE: 20-year-old RGU student could be blind by Christmas with rare eye condition
They were able to fundraise in excess of £20,000 for Jack to receive the treatment in Berlin.
"When we were still in Berlin, because the treatments and stuff are fresh, it was looking a lot better, but they did warn me that when I came home, the first two to three months I'll see fluctuation", said Jack, who was forced to pause his law course at Robert Gordon University due to the condition.
"There's days where my eyesight is incredible again but there's days where, it's still a lot better than it was, but it's not what I'm used to when it's at the good point.
"It's still sometimes difficult to wake up in the morning and see that my eyes maybe aren't having a good day because the day before they were, but it's a lot better than what I was dealing with."
Launching the foundation
"We've already had two people in Scotland contact us", said Dad, Lee, after Jack's story was read by thousands of people online.
"One is from Macduff, she's got a nine year old daughter with the same diagnosis as Jack, but not so severe.
"So we want to start fundraising for for the disease and start hopefully allowing other people to get the same treatment that Jack's just received - this was all Jack's idea."
Spreading awareness
Despite having life-changing effects, RP is relatively unknown. Around one in 4,000 people suffer from the condition in the UK, with an estimated 2 to 2.5 million people suffering worldwide.
"Every time someone was asking me what was going on, even having to tell my friends and stuff, they're like, what is it?
"Because it's not known, when I would say what it is, everyone was like, 'oh, well, you know, it's at least it's not bad'. But had the treatment not gone ahead, it would have been bad."
"They (the clinic in Berlin) actually told us when we arrived, that if Jack hadn't gone when he did, he would have been blamed by Christmas" added Lee.