Birr's Leanne Toner
When Edel Kealy’s daughter Leanne was born 12 years ago, what should have been a purely joyous occasion for the Birr family was tinged with anxiety and confusion.
Leanne was born with albinism, leaving her with very little vision, and Edel was unsure of what lay ahead for her child or where to turn for help and information.
“Really when somebody is given a life changing and hugely impactful diagnosis for their new born baby there should be intensive counselling at best and information at least. I was given nothing; I had to find everything out for myself. It was a massive shock; it took me almost a year to get over it if I am honest,” explains Edel, from Birr.
Edel and Leanne found practical and emotional support from the National Council for the Blind of Ireland (NCBI). NCBI is Ireland’s national charity working for the rising number of people affected by sight loss. Its practical and emotional advice and supports help 8,000 people and their families face their futures with confidence every year and the charity works with 2,000 children nationwide.
There are 911 people with serious sight loss in Offaly, according to Census 2011 figures, with figures from Census 2016 due out next month. Services offered by NCBI include rehabilitation training, independent living skills, mobility training, low vision solutions, IT training, guidance in choosing a range of assistive technology, employment advice and counselling. The majority of people using NCBI’s services have some level of vision.
With sight loss on the increase as our population ages, the charity is keen to create awareness around the help that is out there for people who may be struggling, particularly around World Sight Day, Thursday 12th October. This is a call that Edel echoes, as she struggled to find information on supports and services in the early days.
“We were given no guidance at all after Leanne’s diagnosis and I really needed reassurance that everything was going to be ok. I needed information and I needed somebody to give me all that in a calm manner. NCBI did all that and more. I wanted the best for my little girl and it was like NCBI were our champions.”
The Kealys found their way and Leanne is now a thriving 12 year old, who will start secondary school in 2018. Like all children her age, technology is vitally important and for Leanne, it takes on a new level of importance, as she relies on it for her schoolwork. Technology has made a huge difference to the lives of people who are blind or vision impaired. More and more, mainstream technology is becoming accessible to people with sight loss, such as smartphones, which have built in accessibility features that can be switched on or off so the same phone can be used by someone with sight loss and someone with full sight.
Leanne uses an iPad in school but is also learning Braille and in fact, Braille and technology work hand in hand, with the development of digital Braille devices, which allow users to both type notes in Braille, email them and get online, as well as reading back notes or emails in Braille, as the dots are raised up on the device. It is advances like this that will make all the difference to children like Leanne when it comes to third level education and employment opportunities.
“Technology is vital and really gives options to people with visual impairments,” says Edel. “Leanne uses an iPad in school, as well as magnifiers to help her read standard print. She is learning Braille as well and finds it very relaxing; she says it helps to rest her eyes after looking at the iPad all day.”
Like any parent, Edel wants a bright future for Leanne and she is certainly on the way to achieving that. “Leanne is so independent and that is what I want for her - independence and happiness. I am going to push her to the last, to make sure that she gets the very best out of life. Working with NCBI has given Leanne self-confidence and that’s invaluable. Leanne has less than 10% vision but she absolutely makes the most of what she has.”
World Sight Day is this Thursday October 12, and to mark the day NCBI are launching a bursary. The NCBI bursary will provide financial aid to students who are visually impaired going into third level education every year.
For more information on NCBI’s services visit www.ncbi.ie or phone 01 830 7033.