Fred is nine year’s old and has Familial Exudative Vitreoretinpathy (FEVR), a rare condition which affects Fred’s sight. He lives with mum Karen, dad Dave and older sister Eva in York. As mum Karen explains, “It’s a condition where his retinas didn’t form properly in the womb. They’re folded, like a creased blanket on the back of his eye. ” The condition can lead to progressive vision loss and has the potential for eventual blindness. It can be hereditary or, in Fred’s case, a spontaneous gene mutation.

Yet, as Karen says, “We were very lucky. We were living in London at the time and we got the best people at Great Ormond Street Hospital to diagnose him. Obviously we were devastated because we didn’t expect it. In a way you mourn the child you thought you were going to have but at the same time you get to know this little bouncy baby who you’re in love with.” 

“Because Fred was born severely sight impaired he knows no different. I’m continually told by Fred that he can see perfectly well, and I guess he can because it’s all he’s known. I have to remember that myself. He’s nine now, and we’re giving him a lot more independence as he gets older. He gets stuck in with everything. Of course, things do take a bit longer and he needs more support.”

“A couple of years ago he had a deterioration in his sight and he had to go for an operation. That really put into focus how precious his sight is, and what sight he has left. Because of that we created a bucket list of things he wanted to see and do, from skiing down a mountain to feeding penguins and becoming a zookeeper for the day at Flamingo Land. People were so generous in helping us. It was definitely once in a life time and it was amazing. We take every day as it comes and enjoy what he can see.”

Not only is Fred curious about the world around him, he’s an avid gamer – “he’ll play with his nose almost touching the TV screen!” He attends mainstream school. “We’re very blessed, we have a full education and health care plan and his teaching assistant happens to live in our village and she’s a fully qualified braillist which is unheard of. Obviously the god’s were shining on us. He’s a braille reader and a print reader – a dual learner. He has two curriculums in a way. He can read big print and sometimes it’s quicker for him to type rather than write. He does braille spellings. He just gets on with it.”

“That’s why Family Fund is so important to us, because whilst he might get all the equipment at school what about home?”

How we helped

Family Fund has been a constant in Fred’s life. “Family Fund are with us on the journey. Whatever his needs are, as he grows and develops into a cheeky little rascal, you know that Family Fund is there.”

“The first thing we applied for was a bed when Fred was two. We’d moved into a bungalow and I was worried about him. I’m so glad we were able to get it, that’s exactly what he needed at the time.”   

As mum Karen explains, “When we apply, we always think, what would make Fred’s life better?” Fred’s second grant was for sensory toys, and a few years later when Fred was eight he received an iPad. Last year they were able to go on holiday to Center Parcs. “It was wonderful for all of us – the whole crew!”

 “There’s such a wide variety of things to apply for. You can think really creatively about what would make your child’s life better. It opens up new experiences for you and your child and lives up to the name – Family Fund. Yes, it funds Fred, but it helps all of us. From my first application, and the first visit, to the subsequent applications, it’s been really positive.” 

“With 301 things to do in a day, the last thing you want to be doing is filling out a long complicated form. But Family Fund’s application is just a great relief.”

How it’s made a difference

“When you’ve got a child who’s disabled, or seriously ill, obviously a lot of people don’t work full-time, because they can’t. So that grant – whatever it may be, is really important. Your life changes in lots of different ways and I choose to deal with it positively and whole-heartedly. I dive in with both feet first. I think you have to be creative with your work choices when you have a child with a disability.” Mum Karen co-founded #ToyLikeMe, a creative collective that celebrates “diff:ability in toys.” As Karen says, “It allows me to work from home and also put my energy into making disabled children’s lives better.”

“You think when you’re a mum that you’re going to teach your children everything. You think that it’s your job, to teach your children how to navigate life. But what you don’t first realise, when you have a child with a disability, is that they teach you more than you will ever teach them. It’s a different life, one that you never thought you’d have, with its positives and its challenges, but it’s such a rewarding one.”

 

Find out more about our grants and how to apply