Edith is cat mad.
As well as her beloved pet, 'Francis' she has her very own soft toy 'cat army'. Her mum, Neasa, who is expecting her third child, says she is immensely proud of her daughter and the challenges she can overcome.
Edith has a condition called congenital retinal dystrophy. It is degenerative. The four-year-old is currently learning Braille but is attending her local main-stream school.
Neasa says finding out about her condition when she was about nine months old was intense:
"We noticed something wasn't right when she wasn't looking around like babies should. She had a string of very invasive tests and scans until she was finally diagnosed. I immediately burst into tears. Hearing 'there is nothing we can do' is a huge sentence when it is about your own child. To be honest, we found it harder to tell our parents. We were in shock but there was an expectation that we knew what to do. I think saying the words aloud that our child would completely lose her sight was really tough."
Neasa says the best thing they ever did was contacting the charities associated with sight loss and found Child vision hugely helpful.
"Suddenly, instead of hearing what she couldn't do and what was 'wrong' with her- this group was celebrating what our daughter could do. They commended her on how clever she was to adapt to things like rolling instead of crawling (it is much safer) and finally we felt like we were no longer alone."
Edith has a little brother, Miles and another sibling on the way. Because this condition is congenital, there is a 25% chance the new baby will have the same condition as Edith. Neasa says that there is an element of judgement from others about having another child:
"To us, Edith is perfect. She is fantastic. We wouldn't change her for the world. Her condition is part of who she is, so deciding not to have another baby because it might be like Edith felt like a betrayal of her'"
I asked Neasa if there is pressure on Miles to look after her sister in the future and her answer was surprisingly honest:
"I do expect him to support his sister in the future. They are sibling and have a shared history and bond. I don't expect him to house and feed her, but I think it is hugely important that after we are gone that she has someone who is part of her life story, hopefully, forever, who will be her advocate. Maybe I'm wrong, but instinctively I feel that she needs to have an ally in life and I hope Miles will always be there for her."
Neasa hopes that advances in medicine and research can help make Edith's life easier in the future:
"The stats about those with sight loss getting jobs are frightening. The numbers going to university are also decreasing. I don't want Edith to have to battle for everything in life. I don't want everything to be a massive challenge for her - my wish for her is that she won't always have to triumph over massive adversity. I just want her to have as normal a life as she can. It is what she deserves."
World sight day is October the 12th. Fighting Blindness is hosting a three-day international conference - Retina 2017 - supported by Novartis, with a public engagement day for people with rare sight loss conditions to quiz eye experts taking place on Saturday, October 14 at the Radisson Blu Royal Hotel, Golden Lane, Dublin.
The conference sees eminent eye researchers and clinicians from the United States of America, Canada and Europe come together in Dublin to discuss the latest developments in terms of the cutting-edge research, clinical trials and treatments underway. It comes against a backdrop of figures showing 246,000 people affected by sight loss in Ireland, a figure projected to rise to 272,000 by 2020.
People can register their interest at www.retina.ie
