Thursday, 27 April 2017
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ni4you

Winter 2016

Mum-of-three Sara McCracken from Belfast is CEO of Angel Eyes NI, a charity she founded after her twins were both registered blind at the age of just five-months-old.

Here, she shares her inspirational story of a parent who started out feeling totally alone, but has gone on to help and support not only her own children, but hundreds of families across Northern Ireland…

“In March 2005 I had twins who were born at just 29 weeks old. Due to being born prematurely they both had significant health problems but after being released from hospital, I became more and more concerned about their eyes. I noticed that they weren’t fixing on objects or following me and I wasn’t getting any eye contact from them at all. At around four months old they developed nystagmus, which causes a wobbly movement in the eye [affecting about one child out of every several thousand] and the paediatrician referred them on to ophthalmology. We were living in England at the time and that day, after seeing the ophthalmologist, both of them were registered blind. We were told that they had ocular cutaneous albinism (something that neither my husband or I had ever heard of) which is a rare genetic condition that affects one in 20,000 globally. There was a one in four chance that either of them could have had it…It was just unfortunate that both of the twins had been affected, my son Peter more severely than Connie my daughter.

My husband Kevin and I left the hospital traumatised and confused and spent the next 12 months emotionally trying to comes to terms with it. We started to make plans to come home to Northern Ireland as we felt that we needed additional support from our family, plus we also had a ten-year-old daughter Rebecca, and I wanted her to be able to continue her childhood in as normal a way as possible. In England we had had a lot of support from the voluntary sector, our health visitor and eye clinics and had felt very well supported. When we returned to Northern Ireland, when the twins were 18 months old, I’m afraid to say that the support just disappeared. I couldn’t replicate it and as a result I became more and more frustrated, and frightened, that as a mum I was missing really key development milestones for my children which we could never go back and fix. I started to become more and more anxious that the twins’ eventual outcome would be affected.

One of the services that we did have was from qualified teaching for the visually impaired. I asked the teacher if she would give my name and number out to other families she was working with, which she did. A week later I received a phone call from another parent and we ended up talking for about four hours. Just chatting, sharing and listening to each other. I suggested to her that we should put a parents group together because I really felt there was a lack of support and information available for families in our situation. I confided that I felt lost and that all I was getting was clinical information, which doesn’t give you the tips and tools you need as a parent to overcome the everyday challenges that you face as the parent of a blind child. She agreed it was a great idea and so I went back to the qualified teacher for the visually impaired with the idea of setting up a coffee morning. We received support from RNIB, who did not have any specific children’s services at that time, but kindly gave us the use of their boardroom for the meeting. The next step was to contact as many parents as we could get in touch with via social workers and by putting up leaflets in hospitals, I just really did as much as I could to raise awareness of the event. Twelve families came along which was a fantastic result because it’s such a rare disability. At that first meeting it was very much recognised that there was a massive gap to be filled here in terms of services for parents.

That was the origins of Angel Eyes in April 2007. We formed a committee and a community group. It took us two years to eventually become a charity in 2009, running in a completely voluntary capacity for the first seven years after which point we were lucky enough to receive funding from Ulster Garden Villages which enabled us to employ an administrator. I had given up my career when the children were born, but while trying to establish Angel Eyes, was also working as a childminder which had the double benefit of helping me support my family financially and my children were able to interact with other children who had their sight. It also gave me the flexibility to go and meet other parents at toddler groups or on home visits.

We started off with 12 families in 2007 and now, almost ten years on we support over 600 across the country. We now have five staff and after that first initial cash injection were able to focus on applying for additional funding for premises and staff salaries in order that myself, and other team members could come in full time. We were very fortunate in June 2015 to get Big Lottery Funding, in partnership with RNIB to run a five-year project for educational advocacy for parents. Aimed at children aged 0 to 12, the Family Insight Programme helps families access the resources they need to support their child. Most of the children we work with attend mainstream school, which is obviously a changing picture from many years ago, and one of the biggest issues that parents talked to us about was education so we felt it was incredibly important for us to have that advocacy service in place for them. And it’s been an amazing success, smashing all the targets we had hoped to achieve.

We have since received a second round of funding from the same source, one of the few local charities who had a successful second application, in partnership with Blind Children UK, Guidedogs and SENSE to provide services for children aged 0 to four. We feel very blessed and thankful as it’s an area we are very passionate about, getting that early intervention at that really scary time when parents receive the diagnosis for their child and are feeling totally alone. For most parents it’s the first time they may have ever encountered the condition, the first time they have known about visual impairment in children and have to start rewriting the script for the life they had dreamed of for their child. Our Family Focus project helps pre-school children with movement (which is difficult for a visually impaired child) and helps them prepare and gain the development skills and milestones they need to reach to be able to start school. We are also very grateful to the Halifax Foundation for the means to fund a support worker, a fully-qualified behavioural therapist and counsellor who helps the families who don’t fit into either of the two aforementioned groups. She is the TLC of Angel Eyes and offers the emotional one-to-one support many of our parents need. She also runs a three-weekly Saturday youth club for ages four to 18 at Jordanstown School for the Deaf and Visually Impaired, providing sports and life skills training because most of the time our children can’t access mainstream after-school clubs. It’s a win / win as their pupils get to meet other children who attend mainstream schools and for our children, it’s a time they can engage with other visually impaired kids. For the last three years over Christmas time we arrange a touch tour at the Lyric Theatre pantomime where the children get to go on stage and meet the characters, feel their costumes and props. It’s an absolute game changer for our kids and they adore it!

Our remit is to empower parents with the information to make their own choices. I felt as a parent that I was being taken down a road by clinicians who, for better or worse, were telling me what would happen with my children. As their mum, I wanted to be able to be included in that decision-making process. That’s what Angel Eyes is all about, connecting parents to parents and it’s the biggest strength that we have. We provide workshops, organise family fun days and try and demystify the services for parents to help them join up the dots and ensure they are getting everything that they need, and that their child needs. Our overall goal is to improve the outcomes for all visually impaired children but at the same time bring the voices of their parents to the table. When I started this journey I had a lot of people telling me what parents required and what parents wanted, but with no knowledge base of speaking to parents. What I am most proud of, of everything that we have achieved, is that because of our work with parents, services are now being tailored to really deliver what families, and most importantly their children need.

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