When little Edward Ruddy is tucked in by his mum each night, he knows it might be the last time he will ever see her face again.
The brave nine-year-old, from Belfast, has lived with a squint ever since he was a baby, but last month he was diagnosed with a degenerative condition that will eventually see him go blind.
“As a mother, I knew it was bad,” says mum Mary, 37. “In the past, though, while I picked up on things here and there, at first, I didn’t think much of it. I feel awful now.
“It breaks my heart to know there’ll come a point where he’ll forget my face and he won’t remember what the world looks like. Kids are so resilient, I feel like I’m grieving for him.”
Edward has retinal dystrophy, a disease of the retina which leads to the deterioration of vision.
Now, desperate to make every moment count, Mary is hoping to take her family for a dream holiday to Disney World while her son can still see his hero – Mickey Mouse.
The single mum is determined that she, Edward and his older siblings Sarah, 13, Marina, 14, and Gary, 19, will visit Florida later this year, after he became obsessed with watching the rides on YouTube during lockdown.
“Who knows when Edward will lose his sight?” says Mary. “But Disney is a magical holiday for any child and I want him to be able to see everything while he still can.
“Right now, as a mum, I feel a bit helpless over his condition. I can’t do anything to stop this happening, but if I can do one thing for him, like take him on a once-in-a-lifetime trip, then I want to make sure I do it.”
After noticing Edward was struggling with his eyesight at six months old, Mary took him for his first eye test.
When he turned six, doctors told them he needed prescription glasses, but his vision continued to get worse.
“We used to joke about Edward’s eyesight,” Mary says. “Sometimes we’d point things out around the room and couldn’t believe he wasn’t able to see them.
“At the time, we assumed it was just his prescription. To think now that all this time he’s been going blind, it’s horrific.
While no definite prognosis has been given, Mary knows Edward’s condition is “progressive,” so feels they are now racing against the clock to get to Disney World and have asked strangers to help them raise £7,000 towards costs through GoFundMe.
“Edward is obsessed with watching theme park rides on YouTube and he’s always showing me the Disney ones and watching clips of other people experiencing them,” she says.
“He pesters me over it, begging me to take him there. He loves Mickey Mouse too, so I thought it’d be a perfect holiday.
“I know how badly he wants to go, but it’s such an expensive trip that I’ve never been able to justify it.
“But now it feels like such an important holiday for Edward. It’ll be his first time abroad and probably the only time he’ll get to do it with his sight.”
When she revealed her plan to her little boy, he was over the moon.
“When I told him, he started jumping up and down,” she says. “I don’t think he can quite grasp the idea that the rides on his iPad are real, so when he sees them, he’s going to be ecstatic.
“With the pandemic, we’re just waiting for the go-ahead for travel and trying to raise as much money as we can in the meantime.
“It’s not in my nature to ask for things but, as a single mum with four kids, we need all the help we can get with this.”
For now, Mary is preparing Edward for his future, making sure he is ready for life without vision.
“Edward is now learning Braille,” she says. “There’s no use being in denial – he’s going to go blind, so the more prepared we can be for it, the better it’ll be for him. He’s also started mobility training with guide dogs to get him used to it.
“We’re already noticing changes. He can’t walk to school anymore. I drive him for his own safety.
“He can’t do up the buttons of his school shirt, as they’re too small for him to see. The other day, he even tripped up getting out of the bath.
“Seeing the decline in his vision is truly heartbreaking. I live in constant fear that he’s going to accidentally hurt himself.”
Now the family hope their Disney dream will become a reality in the autumn.
“We’re all desperate to get Edward on that plane as soon as possible, but with the pandemic and waiting on travel restrictions easing, I think it’s realistic to aim for September,” she says.
“I just hope Edward can still see by then. If we can make this happen, I think it’ll be the most magical time of his life.”
To donate to Edward’s fundraiser, visit Mary’s page here