Community rallies round to help send Edward to Disney World

OVER £4,000 has been raised by local people to help send an Antrim boy to Disney World before he loses his sight because of a degenerative eye condition.

Mary Ruddy, who works for Starbucks, volunteers for St John Ambulance is also a dance instructor, wants to take her youngest child Edward to the USA before it is too late.

The nine-year-old had vision problems when he was a baby, but it wasn’t until March 2021 that he was diagnosed with retinal dystrophy – a disease that leads to vision deterioration and blindness.

Edward first had his eyesight checked at six months old, when Mary noticed he had at squint and wasn’t hitting the same milestones as her older kids.

Doctors monitored him for a few years and, at age six, they said he needed prescription glasses.

Since then his eyesight has slowly worsened and he currently struggles with his peripheral vision and seeing beyond a certain distance.

Following the diagnosis, the single mum is determined to take and his teenage siblings – Sarah, Marina and Gary – to Disney World in Florida, to experience the rides and meet his favourite characters - something he has so far only been able to watch on his iPad on YouTube.

“Disney is a magical holiday for any child and I want him to be able to see everything while he still can.” said Mary

“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.

“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.”

She added: “It’ll be his first time abroad and probably the only time he’ll get to do it with his sight.’

“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.”

Mary said it has been hard to remain composed in front of Edward as his condition worsens.

“I am trying to stay strong and don't want Edward to see me upset.

“I feel lost at the minute, you can't really do anything apart from make his wee dreams come true.

“He is a typical nine-year-old boy, he likes to play his Xbox, that is his favourite thing to do.

“To Edward it is normal - the doctor told me his eyesight was never good from day one but over time it has gotten worse.

“He can't see what we see.

“The way I look at it is, when he can’t see anymore he will have memories to think about whenever he is blind.

“For me, I just want him to have the best time he could possibly have - for what he has left of his vision.

“At the minute I am still in shock and really don’t want to believe it - even though I know it is going to happen.”

But she says her caring son is an inspiration.

“He is such a good wee boy. He is always trying to reassure me. This is breaking our hearts.

“The last few weeks have been really emotional and I keep breaking down.”

Mary’s sister Michelle Duffy started the fundraiser, aiming to raise £7,000 towards the trip, and is already halfway there, thanks to the generosity of the public.

“My sister isn’t someone who asks for help and this is completely outside her comfort zone, but she is putting pride aside to help her son to make memories and see as much as he can before he loses his sight.

“Edward is nine-years-old. We have only learned that he is partially sighted and that he has a number of eye disorders such as: Myopia, reduced vision both eyes, Astigmatism and convergent squint and including a very rare genetic disease Retinal Dystrophy which progresses to complete blindness.

“Edward’s sight is deteriorating rapidly and currently only has 6/24 vision, but there is also a chance he could wake up with no eyesight at all tomorrow.

“There is no cure and no treatment to halt this disease.

“As a mother my sister is determined to give him as many opportunities to see what he can while he can.

“Like every child Edward want to go to Disney World. My sister thought she had all the time in the world to do that.

“The family would love to make memories with Edward together by having a holiday of a lifetime and it’s important they make these memories together.

“As a single mother of four children, it may take a few years to manage this.

“However Edward’s eyesight may have deteriorated by then. My sister is devastated and worried she won’t get the chance to give Edward the holiday of his dreams.

“We are trying to push for October this year with the hope some Covid restriction will be lifted.

“I have seen the kindness and support in people with this stuff before and suggested that we put it out here to see if we can make this a reality.

“We do not expect anything but would be very grateful and appreciate any one who can help.

“Any amount is appreciated and we would be so grateful even if you can’t donate, we know this year has been hard on everyone financially.”

But the family has been staggered by the support they have received.

Mary said: “It has been so amazing.

“There have been so many people.

“I got a phone call from a man who said he will sell his collectables to raise money, and a student I know gave £200.

“It broke my heart, people are actually so, so nice.

“All I am thinking about is Edward.”

Local charity Links2Pink has also made an amazing donation of £1,000 towards the total.

The family are now preparing for when Edward eventually loses his sight.

The youngster is learning Braille and has started training with guide dogs.

They now just hope their dream can become a reality and that Covid travel restrictions lift soon.

Mary said: “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. ‘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.”

The family is being assisted by the charity Angel Eyes NI, which aims to create a fully inclusive society for children and young people who are blind and partially sighted so they can achieve their dreams, aspirations and full potential.

The charity provides emotional support to help families come to terms with a diagnosis such as Edward’s and information, signposting and advice on support that is available to empower the family to make informed choices on the best services for them.

For more information log on to www.angeleyesni.org. and for Edward’s fundraiser visit: uk.gofundme.com/f/help-edward-

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