Family from Crumlin on fundraising mission for RNIB

Post date: 
Wednesday, 2 March 2022
Northern Ireland

Crumlin family holding an oversized cheque for the amount they raised for RNIB

In August 2021, Alfie Hannaway's parents were told he has ocular albinism – a genetic condition affecting his eyesight. Just a few months later, they learned his sister, Clíodhna, also has the same condition.

Alfie and Clíodhna's dad, who is also called Alfie, explains that one of the family's concerns was about the children's ability to play.

“We’re a big sporting family," he says. "Each of the kids plays football and camogie/hurling for Naomh Gall in Belfast. So when they were first diagnosed I thought ‘how are they going to play?’. I was worried they'd miss out on so much. Then I said to myself, ‘Why am I limiting my kids? They love to play, so how do we keep doing that?'."

Dad, Alfie, and the coaches at Naomh Gall looked for ways to help the children continue playing. They started using brightly coloured bibs and different brightly coloured balls. A number of other blind and partially sighted children also play on the team.

"So for this year’s Naomh Gall annual charity Gaelic football game, which was held on Boxing Day, we suggested RNIB as the charity and were very thankful to everyone who supported it. It raised £415!" says dad, Alfie.

Sinead Garland from St Galls GAC says, "Naomh Gall are delighted to be able to support such a worthwhile cause as RNIB. Hearing about the difference organisations such as this can make to families like The Hannaways, and in particular the support they give children like our wonderful young players Alfie and Clíodhna, is just fantastic."

Dad, Alfie, explains that the support and advice the family has received over the past few years has been invaluable.

“RNIB has helped our family immensely," he says. "We've received advice and support, including music lessons for both Alfie and Clíodhna that have been a great way for them to grow in confidence. We’ve also received lots of support from the children’s school, Angel Eyes NI, Guide Dogs, the Education Authority, the team at Opticare Opticians and Audiologists and, of course, the NHS Opthalmology team, particularly Ms George.

"Guide Dogs UK has provided them with an iPad and it's helping them to enjoy books, games, and making homework easier and much more enjoyable."

Alfie was a happy, kind, caring child, who we never thought for a second had any vision issues.

Alfie's and Clíodhna's dad, Alfie

The family's path to a diagnosis began in 2019.

"Alfie was four at the time", says dad, Alfie. "A happy, kind, caring child, who we never thought for a second had any vision issues. He didn't trip over, knew all his colours and recognised numbers and letters. He wasn’t that interested when it came to reading time, preferring to get up and act out the stories, but we thought ‘that’s just Alfie’."

It wasn't until a routine eye test that the family learned Alfie has poor vision. He was referred to hospital where tests showed he had ocular albinism and a rare genetic condition that meant his fovea, the area in your eye where your sharp vision comes from, hadn't developed.

"Since he started wearing glasses Alfie has came on leaps and bounds," says his dad. "He moved up reading groups, and now he loves to read one or two books at a time.Now he can see the pictures and pick out words and numbers he knows. He loves to act out the books too, he loves the villains, especially Harry Hook from Disney Descendents.”

Then, in November 2021, the family learned that Alfie's older sister, Clíodhna, was likely to also have ocular albinism. She had previously been diagnosed with nystagmus, a condition that causes the eyes to shake slightly involuntarily and can cause light sensitivity. Knowing that Clíodhna also has ocular albinism has meant the family and school have been able to adapt.

"Clíodhna was moved from sitting at the back to a desk at the front of the classroom and some of her work is now magnified to make it easier to see," explained their dad. “She was recently top of her class!"

Please make sure you make regular eye appointments for your whole family

Alfie and Clíodhna's dad, Alfie

Alfie continues, “Now, we want to raise awareness amongst other clubs of how they can support young people with visual impairment to enjoy sport and not limit them because of their sight. But to look at alternative ways or simple adaptations that could allow children with various levels of sight to play.

The family has started a Facebook page, Alfie and Clíodhna's Vision Journeys, to also raise awareness amoung parents of the importance of getting their children's eyes checked at an early age.

"Please make sure you make regular eye appointments for your whole family. Children can be checked when they're very young, like pre school - not just when they recognise letters. Often vision issues remain undiagnosed," says Alfie.

“We’re looking forward to getting more visual tools to help them through life this coming year, and having successfully received a statement of educational needs for Alfie, we will now journey down the same road for Clíodhna. The kids continue to amaze us everyday, along with their big sister Lily who is also a proud glasses wearer. There’s nothing holding these kids back.”

Mum, Michelle, adds, “When we were first informed about Alfie’s eyesight, I was emotional and thought about how he will be treated 'differently' and that potentially he may never be able to do 'normal' things like drive a car. My eldest daughter Lily just said 'Mummy it's good to be different.' Her words have stuck with me. It's true, different is good, who out there doesn't have something unique about themselves?

“One thing is certain is we're totally blessed to have our beautiful children and the love of a family is like a shield of strength. Alfie won't let anything hold him back and his sisters will be with him every step of the way.”

Michelle is now training to complete RNIB’s Double Dash 5k in May, where runners run tethered to a running partner.

If you would like to support the Hannaway’s ongoing fundraising mission for RNIB’s support services, you can do so via their JustGiving page.