Lad, 8: Things I really want to see before I go blind...
BOY, 8, LOSING HIS SIGHT TO INCURABLE DISEASE
AN eight-year-old boy has drawn up a heartbreaking list of things he wants to see before he loses his sight. Fred Howe was born with a disease that means it’s only a matter of time before he goes completely blind.
But the cheerful young adventurer, nicknamed Fantastic Mr Fred by his family, refuses to let the condition stop him from seeing the world.
The youngster has drawn up a wishlist of things he wants to see and do.
These include going up the Eiffel Tower, high-fiving Mickey Mouse, being a zookeeper for a day, getting up close to a crocodile, swimming with sharks and dolphins, and meeting a Bavarian mountain owl.
But right at the top of his list is for his play-consultant mum Karen Newell, 47, and dad Dave Howe, 46, to get married. They have been engaged for more than 10 years.
At present, Fred can only perceive light in one eye and see up to two metres in front of him with his other eye.
He uses a magnifier at school and needs to be really close up to see things – even zoo animals are too far away. Fred is also learning Braille and how to touch-type, so he is prepared for the challenges of the future.
Karen says: “When I see Fred at school with his peers, he is just like one of the boys. But it is beautiful to see how they look after him.
“One will say, ‘there’s a step there, Fred’ and ‘watch out’, if a ball comes flying towards him.”
Asked how long, Fred – who suffers from the degenerative disease, familial exudative vitreoretinopathy – has before he loses his sight, his mum says: “It could be tomorrow or two years time.
“Puberty is a really dangerous time, so around 11 years old.
“We want him to see as many things as possible, so he can remember them if he loses his vision completely.
“We want to cram everything in and fill his visual memory bank.
“Fred wants to see things up really close but it is really difficult to get up close and personal, which is what he needs to do.
“He’s a mini explorer. He’s a very visual person, he loves looking at things.
“But normal childhood things, like going to the zoo, are not as easy if you can’t see very far.
“He is going to find life challenging, so I want to build up his resilience.
“You have to live in the moment because you can’t change it. But in the back of my mind, it’s always a worry. That’s why we are trying to do as much as we can now.
“There are lots of positive role models around. It’s the world that has to change, not Fred.”
Chatty Fred takes everything in his stride and is eagerly anticipating having his own guide dog.
He says: “My eyes don’t work properly, so I’m looking forward to having a guide dog, so I can walk really, really fast.
“I think Santa should have guide huskies, too, because he’s getting old and needs help.”
About his plans for the future, he adds: “I love animals, but it’s hard to see them in zoos. I would love to be a keeper for the day.” And as for his travel dreams, he
adds: “I see the Eurostar every time I visit Great Ormond St Hospital to see Mr Henderson and the horrible drops lady who puts stingy drops in my eye.
“I have my picture taken by the Eurostar, but I really want to travel under the tunnel with the fish to Paris.
“I want to swim with sharks, but my mum thinks it might be safer to swim with dolphins as they are kinder and don’t bite your bum. I like dolphins because they are very playful and I like sharks because they are really scary, but I won’t be scared because I am brave.” Fred was just six weeks old when his family realised something was wrong with his sight, a nurse noticed his eyes were “wobbly”. He was sent to an eye clinic and diagnosed a few months later. Karen recalls: “They said they’d never seen anything like this. “I was devastated when he was diagnosed. But now we always try to look at it positively.” The family, from York, first decided they needed to help Fred see more of the world after a trip to the Austrian mountains, where his mum and dad had got engaged. Karen says: “When we went to Austria, he was absolutely thrilled by it. The skies were blue and there was snow falling. His face was a picture because it’s a place he’s always known to be special. Dave and I got engaged there and he’s seen the photographs of us looking happy and wanted to see it for himself. I’m so glad he has.
“When we arrived at the top of a mountain he said, ‘wow, it’s a whole new world up here’.
“He’s such a happy boy and he lives with this condition quite happily, but we know that as it progresses, he will lose more, if not all, of his sight.
“Dave and I are doing our best to show him all the things that he wants to see and he’s drawn up a list of lovely things – from the complicated to the simple.”
As well as going to Austria, Fred has so far achieved his ambition of climbing up Big Ben, helping to drive a train between Newcastle and York, feeding penguins and watching the London marathon.
He is also about to go on a Famous Five adventure to hunt for fossils.
But Fred still has plenty of experiences to tick off his list.
As for marriage, Karen, laughs: “It’s one of the things on all of our to-do lists. We will probably go back to Austria and get married some time, but there’s always more adventures to be had first.”
If you want to help Fred fill his memory bank, visit justgiving.com/ crowdfunding/fantastic-mr-fred.