‘I was cross when I found out my twins had limited sight ... getting their eyes tested was a real fight’
When Belfast mum Sara McCracken’s twins were born with impaired sight she wanted to provide support to similar children. Here she tells Una Brankin how her charity, Angel Eyes, is helping youngsters to enjoy their Christmas
Backstage at the Lyric Theatre is strictly off-limits in the precious hour before curtain-up, when the performers are limbering up and preparing to go out and dazzle their audience.
But, for the past three years, an exception to the rule has occurred in the run up to Christmas.
The theatre has given access to partially-sighted and blind children behind the scenes for an exclusive pre-performance ‘touch tour’, to meet and talk to the characters, feel the costumes and props and walk around the stage, making the show a more enjoyable experience for them.
Last week, twins Peter and Connie McCracken were among those at the Lyric Theatre, Belfast meeting the cast of Beauty and the Beast, courtesy of Specsavers, sponsors of the Angel Eyes charity which was set up by their mother in 2007 to reach out to other parents facing the
challenges of bringing up children with a visual impairment.
“When the twins were born prematurely at 29 weeks, after some miscarriages, my world came crashing in,”
Sara recalls.
“Suddenly lots of bad things could happen and disability was a real possibility. After 10 weeks in hospital, my baby son and daughter were discharged as ‘healthy’ — we were delighted and relieved.
“But I had a niggling feeling about their eyesight.”
The twins were born with albinism in Chesterfield, 10 years after Sara’s eldest child, Rebecca (22), by her ex-husband, who was working in England at the time. The family is now based in east Belfast.
“I had to push to get their eyes examined. I was told there was nothing wrong, I was being a neurotic parent and reminded they were premature,” says Sara.
“But when I noticed their eyes starting to wobble at four months, alarm bells went off.
“An ophthalmic specialist confirmed they were severely sight impaired, with no light receptors in their eyes. My whole world fell apart; I didn’t know what we were facing.
“So, I came home to Northern Ireland for support, but it was a case of rose-tinted glasses.”
Sara was extremely disappointed to find no service or support group for parents in her situation.
“I had these two tiny babies and I was terrified — I didn’t know what to do or how to gauge their developmental milestones; what to do when they fall; how to avoid curtailing their independence and sense of adventure” she says.
“I was let down by many well-meaning clinics; they’d examine the twins and just tell me to come back in six months. It took its toll on me emotionally but I’m tenacious and outspoken, so I set up Angel Eyes with two other parents I’d met at the clinics.
“We started off with 12 and it has skyrocketed to 170 families in less than three years. Now, we have a committee made up of passionate and dedicated parents who support others and ensure all parents receive the information they need to help their child achieve his or her potential, dreams and aspirations.”
With the help of the therapy
I’d to push to get their eyes examined ... I was told there was nothing wrong and I was a neurotic parent
and services sourced by their mother and Angel Eyes, Peter and Connie have achieved remarkable levels of independence.
Both are doing well in second-level education and enjoying the camaraderie at their local RNLI club. Peter now has 18% vision, while Connie has 22% and better near-vision than her twin.
As Sara explains: “If Peter’s in the canteen at school (Sullivan Upper in Holywood), he’ll find it difficult to see what’s up on the lunch menu, and he won’t recognise who’s in a room with him, so he’ll call ‘Is that you, mum’, or whoever.
“It can be difficult for him not to feel marginalised but he has incredible support at school.
“He has a guide dog to take him to the bus with his friends — he doesn’t like to feel apart from the group going to school together.
“He uses an iPad for everything and he plays for the hockey club.
“When he started, he’d tell me he was always picked last and my heart would break for him. But the other day he was delighted to be picked fourth. He got the Most Improved Player award and that’s been amazing for his confidence.”
Connie attends Bloomfield Collegiate School in Belfast and walks halfway to the school with the help of her guide dog.
“She doesn’t avail of the technology Peter does — she prefers to lug her big school books around,” Sara laughs. “She’s as independent as she can be. She supports Peter out and about, when they’re not fighting.
“He can’t tell the difference between fallen leaves and dog poo, so he’ll think the whole pavement is covered in it and tells Connie to go ahead of him. They
are close but it was a really good move separating them for their education.
“With their white hair and glasses, they could have been very much lumped together. It was their choice to go to different schools and it has worked out very well. They are tickled when people they know separately meet them and say ‘Oh, I didn’t know you had a twin’.
Sara admits to flashes of anger in the past, over the genet- ic card dealt to the twins. There is approximately a one in 1,200 chance of a child being born with albinism, depending on the parents being carriers of the gene and passing it down. The condition brings vision problems, as the retina is affected.
“I was very cross and felt it was so unfair, but things have worked out for both of the twins,” she says. “If I could, I’d give them their sight back in a heartbeat, but they cope with the challenges really well.
“At times it has been hard for them but as they’ve got older, they understand their limitations better.
“It’s funny — they found out there was a taxi service available to take them to school and Connie asked why we weren’t using it.
“I explained there was no need. She agreed, but said that it would be nice when it’s raining. Ultimately, they don’t want to be seen as any different from the rest. Unfortunately they are to some extent but we always put a positive spin on it.
“They’re both pretty academic but Connie wants to be a pop star or a YouTuber — whatever that is? The important thing is for them to know anything is possible.”
It’s been hard for them, but as they’ve got older they understand their limitations much better