After being diagnosed with a rare eye condition, an RGU law student was told he could be blind by Christmas.
Since his diagnosis a month-and-half ago, 20-year-old Jack Binnie has lost nearly 70% of his eyesight due to a rare genetic condition called retinitis pigmentosa.
Causing a rapid loss of eyesight, Mr Binnie’s condition was labelled as “very aggressive” and was told there was no cure.
However, his parents found a private clinic in Berlin which offered treatment.
They are now trying to raise £20,000 to help him access the first of two rounds of treatment which could help Mr Binnie regain some of his eyesight.
The first symptoms started as a ‘bit of joke’
The first-year law student first started to notice something was wrong when he saw little balls of white and “TV static” in his vision.
When Mr Binnie went to the opticians in July, he was told his eyes were still adjusting to his new glasses. But at the start of October, the Kintore resident started to lose more of his peripheral vision.
Working in his role as supervisor at the Hilton at Teca in Aberdeen, he said: “I would have to really focus to see things or at my work people would sneak up on me and I’d actually get scared, I would jump.
“It kind of became a bit of a joke but I didn’t realise how serious it was.”
Going back to the opticians, they noticed his prescription had jumped quite significantly and took some scans.
He said: “I went through to the scan room at Specsavers and they had found these cysts like fluid things behind my eyes and discovered that my left retina was swollen as well.
“So after that, I got sat down and was taught that worst case scenario, it could be cancer, or it could be something that could make me blind.
“They then told me that I needed to go right away for emergency appointments at the hospital. And then from there on, it was just four weeks of constant tests and scans.
“It was just kind of always in the back of my head that something’s not right. But I was just letting it come to a head and I didn’t expect it to come to the one it did.”
All I could think was ‘Jack’s going to live in darkness’
Jack and the family were told he had a “very aggressive” form of retinitis pigmentosa, one which the NHS said they had never seen before in someone his age and that there was no cure.
His mum, Pauline Binnie, said: “I actually had to leave the consultation because I couldn’t cope with what they were saying.
“What worries me is I kept thinking Jack’s gonna live in darkness and I wasn’t coping with it. I’m not going to be around forever and I need to know that he’s going to be okay.”
Jack is a black belt in karate and accomplished saxophonist.
She continued: “Everything he sets his mind to he achieves. He aims high and he always achieves it.”
Now, she added: “He’s lost all his independence. One minute, he had it all and the next minute, he’s got it all taken from him. And that’s heartbreaking, absolutely heartbreaking.”
Since his diagnosis, Jack has lost all his peripheral vision and has no night vision at all.
His dad, Lee Binnie, said: “The whole family is devastated but Jack has been the rock, not me. He’s taken it really, really well.
“All his peripheral vision has gone you can only see directly in front of him. And he’s got no night vision at all so you’ve got to keep the lights on.
“He can’t drive, he loves driving, he’s got his own car. I’m going to sell that, he doesn’t want to have the car anymore, it just upsets him.
“It’s devastating for him, it’s life changing.”
Focusing on raising funds and awareness for now
Not content to accept the diagnosis, Mr Binnie’s parents looked into private clinics and found a suitable clinic in Berlin offering treatment.
With a 75% success rate, the £20,000 treatment could help restore some of Mr Binnie’s sight.
Mr Binnie and his dad will be travelling to Germany next week to start the first part of the treatment.
He will receive 90 minutes of “shock-like treatment” from Monday to Friday for two weeks with another set likely to be needed over 12 months later.
Mr Binnie is remaining positive. He said: “I am focussing on raising awareness, trying to get funds for myself and potentially other people. I want to make people aware of the condition.
“This condition is life changing and there’s barely any knowledge on it.
“I think people that have problems with their eyes or headaches and stuff really need to think about going to the optician and getting regular checks because although my condition can’t be cured, if I had realised back then I could have maybe started treatment earlier on.
“I’m hoping to regain at least more sight than what I have at the moment. That would be fine for me. Hopefully they can get rid of that TV static stuff that I see all the time.”
The family have set up a fundraising page to help raise money for the treatment but also to help raise awareness for the disease.
They will also be hosting a fundraising event on February 18 next year.
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