I want to live here for ever..
Fred Howe visits Disneyland as he fulfils dreams after Mirror appeal
kled with magic. After the first leg to London King’s Cross, engine driver Tam Duffy let Fred sit in his seat, before they headed off to the Eurostar.
“Wow, wow, wow,” exclaimed Fred, as security staff allowed him a look at the X-ray monitor. “It’s just like magic and you can see through everything.”
Driving through Paris in the car, the Eiffel Tower came into view and we all gasped. All except Fred. His vision is already very limited, and he couldn’t see it. But when the huge monument is right front of him, he shouts: “It’s shockingly big.”
After climbing the tower with his mum, it’s off to Disneyland. In the evening, he’s given front-row seats for the amazing Disney light show.
He throws his hands in the air with joy when Star Wars appears. He said later: “We ate in this great place and met Tigger who was so excited he almost knocked my sister over.
“It’s magical, fantastic. I love it here. If this is what happens at Disney, then I don’t ever want to leave.”
Fred was born with a condition called familial exudative vitreoretinopathy, caused by a spontaneous mutation of DNA. “It’s like a spelling mistake in his DNA,” Karen explains.
But Fred makes the most of life. He uses an iPad with large print at his mainstream school and now has grade two in Braille. He has been trained to use a cane, but he hates it. His parents don’t know when he will lose his sight completely, but “danger times” can be around 11 years old or at puberty.
At present, Fred can only perceive light in one eye. Doctors have warned he must avoid contact sports and are in constant fear of his retina detaching. “The doomsday scenario is losing his sight completely,” Dave said, wiping away a tear.
“But we hope that does not happen for a long time, and the longer it goes on the more we can fill that memory bank.”
Karen added: “We are tying to do what we can to enrich his life and cram as much in as we can.”
Fred was diagnosed with FVR when he was three months old.
“It was a huge shock,” Karen said “You have this guilt that you’ve given it to him.” At home, his parents watch his every step, with tape wrapped over the table edges to soften any impacts. Karen said: “We live in constant fear.”
She said of Fred’s list: “The reason for doing this was firstly for Fred, but also we want the world to see that kids with sight loss can do anything.”
And it’s clear nothing is going to hold Fred back as he looks to tick off more “must-see” items. “Dolphins are next,” he tells us, beaming. “Then a tropical island.”
We want to show what kids with sight loss can do KAREN NEWELL ON SON FRED’S LIST OF DREAMS