A terrifying descent into darkness aged just 22 ...but I was determined not to accept my fate
HIS loss of vision happened so gradually that Rory Dewar failed to realise he had gone blind in his left eye until the hood of his sweatshirt momentarily fell over the right side of his face and he could suddenly see nothing. It was only when the then 22-year-old law graduate hastily pulled the material back that the busy street ahead of him swam back into focus. Shrugging it off as the possible knock-on effect of a few blows to the head sustained that season, the keen amateur rugby player made up his mind to see an optician as soon as possible. But within six months, the blurred vision he had experienced that day in his left eye would spread to the other – and, devastatingly, he would find himself officially registered blind as doctors diagnosed him with a rare medical condition. Now, in an astonishing clinical breakthrough which could give hope to thousands, he can see again – and is even back driving and playing the sport he loves.
The turnaround comes after he signed up 18 months ago for a ground-breaking gene therapy trial in the US, which required volunteers to be injected with a virus – into both eyes.
Last night, in an exclusive interview with The Scottish Mail on Sunday, he said: ‘It’s been an incredible journey. I can hardly believe I was legally blind and now I can see again. My family and friends are astonished. The clinical team are astonished. I’ve been their most successful candidate so far.’
He added: ‘I don’t think what I did was brave or pioneering, just something that had to be done, and if it helps others in the future then I’m glad I’ve played a tiny part in making it possible.’
The 90 people from all over the world who took part in the clinical trial all suffer from Leber Hereditary Optic Neuropathy (LHON), a condition caused by a gene mutation and which targets mainly males aged 15 to 25, or women going through the menopause.
MANY sufferers of LHON, which kills off healthy cells in the retina, leading to the optic nerve dying, are unaware they are even carriers until they start to go blind in one eye, followed by the other within a few months.
There is no cure and experts believe the disease, which affects one in every 30,000 people, is triggered by a number of factors, such as smoking, excess alcohol, prescription drugs or sports injuries.
At first, Rory’s vision loss was thought to be linked to a series of concussions he had received in rugby matches in early 2017 and doctors thought he might have a bleed in the optic nerve.
After an MRI scan and tests ruled out a number of options, including multiple sclerosis, he was told it was LHON, a condition few people have even heard about but which leads to irreversible blindness.
He said: ‘The news was a shock. I’d always been really active but my failing eyesight meant giving up a lot of things that made me happy, like rugby.
‘I played it for as long as I could but my hand and eye coordination became terrible, so I stopped, and I took the decision to stop driving before they took my licence off me. I was struggling, especially if the sunlight hit the windscreen and there was glare. I no longer had any contrast because I was colour blind – another symptom of the condition.
‘Faces were really difficult to make out, which made me feel selfconscious in social settings. Simple things like cooking became a problem and I kept accidentally cutting myself in the kitchen.’
He added: ‘I had some really bad days as I tried to come to terms with what was happening to me. I still had limited peripheral vision, but the central area of my eyes was fogged over and I could no longer see anything straight on.’
Officially registered blind, he was offered a white stick, but declined.
One of the hardest telephone calls he made shortly after the diagnoses was to his mother, Freda, as the gene mutation is passed down the maternal line. He not only had to tell her he was going blind but that she was likely to be a carrier.
Now 25, he said: ‘It’s not the kind of call you like to make. How do you tell your mum you’ll be blind within months. She was devastated when I told her. The condition has never been triggered in her, so she’s never had any eyesight problems and may not ever. There was no way any of us could have known anything about LHON.’
Sufferers can opt for vitamin therapy or steroids, which are thought to improve some symptoms. Partial vision recovery has been reported in some people with other mutations of the gene, but is extremely rare. Rory’s type, 11778, which is the most common, accounts for about 50 per cent of all known cases in the world.
Rory, who had been working for a year as an operations analyst with an investment bank after graduating from the University of Glasgow, said: ‘My choices were suddenly limited and trying to see with what was left of my peripheral vision became the new normal for me. My employer was great, giving me time off and new equipment to help me do my job. I could’ve continued on like that but I didn’t want to give in to blindness. I wanted to be able to look back in 20 years’ time and know I’d done everything possible to get my sight back.’
One low point came when he was in London for work, and crossing a road he caused a cyclist to brake suddenly and fall off his bike. Rory
recalled: ‘There I was in the middle of the road and he was shouting at me. I had to shout back that I was blind. We were both embarrassed.’
It strengthened his resolve, adding: ‘The vitamin therapy didn’t work, so I set myself a target to get on a clinical trial. I thought, “I’m going to do whatever I can do to get my sight back and if it doesn’t work, at least I tried”. I don’t know what my life would be like now if I hadn’t been accepted.’
With no suitable trials at that stage in the UK, he looked further afield and found one at a medical facility in Aurora, outside Denver, Colorado. The team running it were looking for participants who met specific criteria – blind for less than a year and with his type of mutation. With just a week to go to the cut-off date, he flew out, in May 2018, to begin treatment, along with volunteers from countries including Singapore,
Palestine and Canada. The procedure involves a virus-based substance, to be commercially known as Lumevoq when it goes mainstream, being injected into both eyes in a one-off treatment. Rory, who grew up in Stranraer, Wigtownshire, said: ‘I was relieved when I got accepted, but the idea of the injection itself scared me. I wasn’t keen on needles before I went and this involved injecting into the eyeball while your eyes are clamped open and you are wide awake. Realistically, what choice did I have, though? It was go ahead with it or live with blindness. In the end, it wasn’t as bad as I thought. It was all really straightforward.’
THE initial injection was followed by check-ups at twoweek intervals, increasing to four weeks, three months and eventually six months, and Rory and his partner, Lauren, have made the 9,000-mile return trips at the expense of GenSight Biologics, the Frenchbased company which has developed the gene therapy.
Within the first 24 hours of treatment, the medical team were astonished to discover when they held an eye chart three feet away from him, there was already a slight improvement – but, with the stakes so high, he admits he was scared to hope. There was never one big eureka moment, he says, where he found he could suddenly see again. Instead, progress from day to day was on minute levels, but steady.
He said: ‘I forced myself to keep my expectations deliberately low or I couldn’t have coped. There was a chance the treatment might not work and I could’ve found myself back where I started. The idea is your genetic make-up changes to get rid of the mutation.
‘We were worried the early improvements might be a fluke and it was only as the weeks passed that I began to relax and accept it might actually be working.’
From seeing just a few hazy letters on the board in the beginning, within months there were about 20.
He added: ‘It was hard for some people to understand how long it was taking and they’d try testing me for a laugh. I’d tell people I could see a few more letters on the chart and they’d excitedly say: “You can see! Well, who’s that over there?” It was still too early for me to see any distance away, so I couldn’t do what they asked and they’d joke about it, saying things like “I thought you said you could see?”.’
In between appointments, he did his own DIY testing by trying to read car registration plates from 20 feet away – the legal minimum required to get a driving licence back – or measuring his progress as he commuted to and from work by attempting to work out information signs on the trains, moving back a row or two in the carriage each month to create more distance.
In May, Rory, who lives near Glasgow, will travel to Colorado for his final check-up. He said: ‘I’ve one trip left and that’s it. I’ll miss the medical team as we’ve grown close. I’m not sure where I would be if I had carried on with the therapies available to UK sufferers. I certainly wouldn’t be back driving and playing rugby like I am now.’
How do you tell your mother you’ll be blind in months?