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50:50 Chance: Sophie's Story

September 18, 2019

Sophie, aged six, has aniridia – a rare genetic eye condition. Her family travels 113 miles from Loughborough to Moorfields Eye Hospital, a leading specialist eye hospital in London, for ongoing treatment.

Aniridia is where the iris (the coloured part of the eye) has not formed properly. People with this condition may also develop further eye conditions such as glaucoma, cataract and corneal problems. There is no treatment or cure for aniridia but there are treatments available for some of the associated eye conditions. While some people have quite a lot of sight loss, others may only have mild blurred vision.

Moorfields Eye Hospital in London is one of the best in the world and when Sophie has treatment, the family stay free of charge in the Ronald McDonald House located on the top floor of the hospital.

Sophie’s mum, Georgina, shares the same condition and in total the family has spent decades receiving treatment at Moorfields Eye Hospital. Georgina, who is completely blind, has had about 25 operations over the years and her left eye removed. She explains how the existence of Ronald McDonald House Charities UK makes such a huge difference to their lives:

“Genetic testing found we had a 50:50 chance that our baby would be born with aniridia and we discovered that I was pregnant on the same day as those results. But it didn’t change our minds about starting a family,” said Georgina. “I think there are worse disabilities. I live an independent life and have full function of my mind and body. The only thing I’m not allowed to do is drive.

“I was fully diagnosed with the condition at about 18 months old. We were living in Germany at the time because my father was stationed there in the RAF and so, I was treated there in a military hospital. When I was 11 years old, we moved to back to the UK and I started having treatment at Moorfields Eye Hospital.

“I used to go to the hospital every three weeks. Back then there wasn’t a Ronald McDonald House and so we paid for hotels or went there and back the same day on public transport. It went on for about five years; the travelling and the financial cost was quite a strain on my whole family. When I’ve had operations, instead of travelling to Loughborough, we’ve stayed in a hotel just up the road but the cost of it was never less than £150 per night. When you add your transport and food costs on top of that – it’s a huge amount of money.

“I had a number of problems during pregnancy. I stopped taking my glaucoma medication due to the risk and had laser eye surgery to control the pressure, but I ended up losing all my remaining vision.

“When Sophie was born, my husband said he knew she had aniridia as soon as she opened her eyes because there was no colour; her eyes were just black. The doctors diagnosed her within a couple of days.

“With Sophie, we travel to Moorfields every six months and stay in the Ronald McDonald House. I think we must have stayed in the House about 25 times. Being able to stay there takes a lot of financial pressure away. We’re able to cook meals in the House and so the only cost is the £150 train fare.

“Moorfields is the best eye hospital in the world and everyone’s condition is complex, which means the waiting time to see a doctor can be very long and this, unfortunately, plays havoc with transport arrangements. But that doesn’t matter when all you have to do is get the lift upstairs to the House.

“Living in the House is lovely. It’s clean and well-thought-out. It’s nice to sit and chill and meet parents in similar situations to yourself. Having gone through it and now experiencing it with Sophie, I have an awareness of how the children are feeling and can help families.

“The House is quiet and calm. The staff are always friendly, and they know us and are always welcoming. Sophie really enjoys staying there; she’s not confined to a hotel room. They have a big living room with toys, books, a TV and DVDs and so it’s much more entertaining too.

“Because we’ve stayed so many times it’s not awkward for us to move around. Staying in a hotel would take us out of our comfort zone. Every hotel room is different. In my own home, you would never know that I couldn’t see anything and staying in the House is like that. My husband is able to relax because he doesn’t have to worry about me bumping into anything and hurting myself. The staff keep the walkways clear and it’s very well lit, which helps the visually impaired. Sophie and I can move around independently.

“Staying in the House is great in other ways too. It provides a base and with it being located directly above the hospital, you also don’t need to cart your bags around with you and can pop upstairs if you forget something.

“We’ve tried to make our visits to London fun for Sophie. One time we went to Buckingham Palace and because we had disabled tickets we were taken through the front gates; she felt like a Princess. Sophie loves collecting the stickers that the hospital give her after a test; we have a book that she sticks them in after every visit.

“When we stay in the House, we always donate the £25 key deposit. We’ve also bought things they need from their Amazon Wishlist. The staff are so grateful but what we’ve given back is nowhere near what the House has given us.

“Sophie has got a lot of my condition, but she doesn’t have glaucoma yet. The doctors don’t know when it’ll come – it could be tomorrow or when she’s 30 or 60 or whenever, but it’ll come at some point and it’s the one which will do irreversible damage.

“Sophie is a tough cookie. She goes through quite an ordeal when she’s in the hospital, particularly when they test her eye pressure and I know through experience that it’s not pleasant. I’m very proud of her.”

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