32-year-old mother who is going blind compiles touching bucket list of things to see
She was diagnosed with Stargardt’s disease, a condition gradually stealing her ability to recognise the faces of loved-ones, read, drive — and will eventually leave her blind
A mum who was told in a routine eye appointment that she is going blind has created a bucketlist of things to see before her vision fails - but will never get to see her young son as a grown man.
Katie Berrill, 32, thought she simply needed reading glasses when she popped into her opticians for a routine appointment on June 13 last year. But the mum-of-one was horrified to be diagnosed with Stargardt’s disease, a condition gradually stealing her ability to recognise the faces of loved-ones, read, drive — and will eventually leave her blind.
But Katie hopes to make the most of her vision in the meantime and she and her husband, Greg Berrill, 32, have planned a bucketlist of things she wants to see before her eyesight disappears forever.
Her list includes going up to Norway to see the Northern Lights, along with trips to Croatia and Lake Garda. She also hopes to see whales for the first time by going whale watching and to read all the books she can before her vision fails completely.
Katie, from Northampton, East Mids, said: “When I was told the diagnosis, it was an absolutely massive shock. I had a massive panic attack and I couldn’t breathe.
“I literally don’t know how I got through those first few days after the diagnosis. I was just panicked, I couldn’t sleep, I couldn’t eat, I just cried. I was really scared. People always say to me how did you not notice, but when it’s been gradual you don’t really think it’s anything different to anybody else.
“Even with people’s faces, if I look at somebody I have to look at their nose. I can’t see their eyes or if I look at their eye I can’t see their nose or parts of their face. I didn’t think anything was wrong until it was pointed out to me that that was the vision loss."
“It’s something that's invisible so people don’t realise. It’s not something that affects your health so people don’t realise the mental side of it. The stress, the upset. You can’t get away from vision loss — it’s the first thing you see when you wake up and the last thing you see when you go to bed.
“You’ve got a battle going on inside your head all the time. If I go out with my little boy Harvey and I really enjoy something, I feel sad because I wonder if I’ll be able to do it next year. Am I still going to be able to do this with him? That’s really hard. It’s so difficult thinking that I might not be able to see his face when he grows up.”
Stargardt’s macular dystrophy progressively damages part of the retina called the macula, which is responsible for clear, sharp straight-ahead vision. Daily tasks such as reading and recognising faces will become impossible.
Macular disease is the biggest cause of blindness in the UK, according to the Macular Society.
Katie always thought that the ‘flashing lights’ she saw were normal because it was never picked up by opticians during her biannual eye appointments. But getting her head around what her new future looked like proved a struggle, particularly with her seven-year-old son Harvey to think about.
Katie said: “It sounds really horrible, but sometimes when people moan about the small things or things they could change, fixable things, I have to sit there and bite my tongue because I just think there are things they could do about that.
“I don’t want to become that person. If I go out for drinks with friends or something I just think, why can’t I be this person who can just go out and enjoy myself?
“Then I come home and I have this massive burden that I’m not going to be able to see things. It’s a massive thing to live with every day. It’s hard for anybody at any age, but to be diagnosed with something like this in your thirties you don’t think you’re going to get a genetic condition at this age."
“I’m still able to drive and read, but when I come in from the outside into the house where it is darker, my vision moves about for a while until it settles. I have flashing lights in my vision all the time. It affects my central vision so down the line Stargardt's will take all of your central vision.
“That’s everything like reading, watching tv, driving and recognising people’s faces. When I lose my licence is what worries me, because I think I’m going to be absolutely devastated because I’m going to lose that little bit of independence. I can’t actually think about that without getting really upset.
“My grandparents do their crosswords and gardening and my grandad is driving at 82, and I just think how hard is it going to be for me? I’ve got to live for the moment and live for the day.”
With support from her husband Greg, Katie has seized all the opportunities to make the most of her eyesight while she can.
Katie said: “I want to see the Northern Lights. That’s my massive thing I want to see. Northern Lights and whale watching — that’s the plan. That’s one of my dreams, but they’re never guaranteed. I want to go to Norway to see them. I follow all the pages and they look so nice in Norway — they look amazing.
“We’re trying to get away more. We’ve got two holidays booked to Lake Garda and Croatia to see different countries. I just look at people all the time because I’m going to lose facial recognition which is really hard to comprehend.
“I make sure to enjoy doing little things with my little boy like reading with him and helping him do his homework. When I’m out with the dog I don’t rush about. I go a bit slower and try and look at nature. I read books, I have loads of books I want to read. I really make sure I appreciate things more. I always did before anyway, luckily, but now I just make sure I take more time to appreciate things.”
Cathy Yelf, chief executive of the Macular Society, said: “Macular disease is the biggest cause of sight loss in the UK, affecting 600,000 people. People in the late stages of the condition are often unable to read, drive or recognise the faces of their own friends and family. It is an extremely isolating and debilitating condition.
“As Katie’s experience shows, a diagnosis of macular disease can be devastating, leaving many people uncertain of their future. While there is currently no cure for Stargardt, there is lots of support available. Finding out you are losing your sight and adapting to changes in your vision can be extremely difficult. We’re glad Katie was able to benefit from the support of our counselling service who helped her deal with the emotions she was going through.”
“We fund medical research so that we can ultimately find a cure for macular disease but research into eye diseases, such as Katie’s, is shockingly underfunded. There is a lot of exciting potential in gene and stem cell therapies but we alone cannot fund all the applications we receive.”
Stargardt Disease Fact Box (taken from NHS Moorfields Eye Hospital website):
1. Stargardt disease is a rare inherited condition which affects one person in every 8,000 to 10,000 people.
2. The light-sensitive layer of cells in the macular region of the eye degenerate. Symptoms, which typically develop before the age of 20, include a loss of detailed vision and colour perception, blind spots, wavy vision, blurriness and difficulty adapting to low light levels.
3. Despite not losing peripheral (side) vision, people with Stargardt’s will usually reach the point of severe vision loss.
4. It is currently untreatable.
Author: Jessica Cripps
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