A Co Antrim dad has spoken of the pride he has for his children after they were diagnosed with incurable eye conditions.
In August 2021, parents of three, Alfie and Michelle Hannaway from Crumlin, were told their youngest child, also called Alfie, now aged six, has ocular albinism – a genetic condition affecting his eyesight.
Their journey began in 2019 after it was discovered at a routine check up that Alfie had poor vision.
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Dad Alfie said: “He was four at the time. A happy, kind, caring child, who we never thought for a second had any vision issues. He didn’t trip over, knew all his colors and recognized numbers and letters.
“Yet 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 was during a routine trip to the opticians that it was discovered he has poor vision, +10 for those who understand what this means. After a hospital referral and some tests, and a fair bit of waiting, we have learned Alfie has ocular albinism and was born with a rare genetic anomaly where his fovea did not developed since birth, the area in your eye where your sharp vision comes from.”
Since getting glasses, little Alfie has come on leaps and bounds, moving up in 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,” Alfie added.
“He does still love to act out the books too. He loves the villains, especially Harry Hook from Disney Descendents.
“In November past, 2021, we were told Alfie’s older sister Cliodhna probably also has ocular albinism. We knew she also had nystagmus, which causes the eyes to shake slightly involuntarily and can cause light sensitivity, and she wore glasses, but neither Alfie or Clíodhna have the lighter hair we’ve always associated with having albinism.
“We had no idea there were different types and that it could affect your sight. She was recently top of her class, with a move from back to the front of the class making a big difference, and some of her work is now magnified to make it easier to see.”
Since discovering their children’s diagnosis, the Hannaway family has been supported by RNIB.
From support and advice to music lessons for both Alfie and Clíodhna that have been a great way for them to grow in confidence, they have also been supported by other groups.
The school where the siblings attend have been heavily involved in helping, as well as Angel Eyes NI, Guide Dogs, the Education Authority and the team at Opticare Opticians and Audiologists and the NHS Ophthalmology team, particularly Ms George.
Guide Dogs UK have provided them with an iPad which has helped the children to enjoy books, games, and has made homework easier and much more enjoyable.
“We’re a big sporting family with each of the kids now playing football and camogie and hurling for Naomh Gall in Belfast,” Alfie said.
“When Alfie was first diagnosed I thought ‘how are they going to play?’ ‘what are we going to do?’, ‘he’s going to miss out on so much’. They love to play so how do we keep doing that?
“We looked at wearing brightly colored bibs and using different brightly colored balls. The coaches have been fantastic. There are actually a number of other partially sighted children playing on the main team too.
“So for this year’s Naomh Gall annual charity Gaelic football game, held on Boxing Day, we proposed RNIB as the charity and were very thankful to everyone who supported it, raising £415.”
Sinead Garland from St Galls GAC said: “Naomh Gall are delighted to be able to support such a worthwhile cause as RNIB. Hearing about the difference organizations such as this can make families like The Hannaways, and in particular the support they give their young children, our wonderful young players Alfie and Cliodhna, is just fantastic.”
The family now want to raise awareness amongst other clubs on how they can support young people with visual impairment to enjoy sport and not limit them because of their sight. They want to educate how alternative ways or simple adaptations that could allow children with various levels of sight to play.
As well as this, they’ll be raising awareness among parents on the importance of getting children’s eyes checked at an early age.
Alfie continued: “Children can be checked when they’re very young, like pre-school – not just when they recognize letters. Often vision issues remain undiagnosed.
“So we started a Facebook page called Alfie and Clíodhna’s Vision Journey and 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 Cliodhna.
“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 added: “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’ and 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 we are 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 in pairs with one blindfolded and the other acting as a guide.
To support the Hannaway’s ongoing fundraising mission for RNIB’s support services for families affected by sight loss visit HERE.
For more information on their campaign, please visit their Facebook page on this link.
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