LIKE most schoolgirls aged 15, Shannon O’Donoghue is preparing for her Junior Cert exams in June.
Shannon, who “loves school” and wants to “study marine biology in Galway” is intelligent, capable and determined to do well academically. Her teachers have said that “if it wasn’t for her condition,” she’d be a straight A student — but Shannon struggled through her recent pre-Junior Cert exams and failed to complete most of them.
The main thing holding her back is that Shannon can’t see properly and is legally blind.
“I was born with two incurable congenital eye conditions, nystagmus and optic nerve hypoplasia,” said Shannon, from Blarney.
“The optic nerve hypoplasia means the nerves aren’t developed fully, so that’s what’s causing my vision problems.
“Nystagums is a condition that comes with hypoplasia. It makes my eyes shake or move all the time and go in and out of focus. It also causes vertigo because it feels like things are moving all the time. I can’t see into the distance, I can only see real close but my eyesight varies all the time from day to day.
“The strain on the nerves and muscles around my eyes from the spasming all the time also causes a lot of pain. It feels like there’s pressure on my eyes all the time, like my eyes are being squashed or like I’m being punched in the eyes over and over.
“My eyes move all the time, even if they’re closed and the pain stops me from sleeping at night. There’s nothing I can do about the pain and there’s nothing I can do when I can’t sleep because I can’t read a book or watch TV to entertain myself. I have to be in the dark.
“I’ve missed a lot of school because of it and my friends think I’m having a grand old time at home but I’m not. I’m just sitting at home with the blackout blinds down, waiting for the pain to pass,” she said.
Despite the physical and psychological challenges of living with a visual impairment, never mind the constant physical pain, Shannon deals with her condition as best she can and is determined to progress through the mainstream education system, attending North Presentation Secondary School in Farranree. She says she is eager to go to college and fulfill her dream of becoming a marine biologist.
“It can get frustrating at times and I get angry about it sometimes, but it’s not depressing me, it’s just hard. I think I deal with it pretty well. If I let I let it depress me, I’d be depressed all the time.
“I was raised to believe that I was the same as everyone else.
“It was never a big issue when I was younger because we never made it a big issue, we just dealt with it.
“As a child, I was always extra careful because of my vision and I only started using a cane recently, in the last few months because I never really went anywhere anyway.
“But now I’ve started mobility cane training with the NCBI [National Council for the Blind in Ireland] and they’ve given me other aids in the past, like a slanted board to do my homework, and I got dark glasses from them as well because my eyes are so sensitive to light.
“I can make my way around places I know off by heart quite well, even when my eyes are bad and I can’t see anything at all. It’s just getting out and making my way around places don’t know that’s the problem. That’s why the mobility training is important.
“The biggest challenge is my school work because I can’t see the board or graphs in class and I really want to go to college.
“The education board gave me an ipad for school, with all my school books downloaded on it, and I can make the writing as big as I want and I can change the colour of the text as well so that I can see it better.
“I love books and I have an e-reader at home and that helps me a lot. If I was to read an actual book it would probably take me ages to read just one page and then I’d have to take a break.
“I used to read all the time but lately I’ve been in a lot of pain. I really need to be able to see better, otherwise I’m just going to fall behind in school,” she said.
Shannon and her mum, Lyndsey, recently discovered new technology based eyewear that could help her in all aspects of her daily life, including school work, and potentially help her achieve mobility without the use of a cane.
She recently set up an online Go Fund Me page to help raise the money to buy the expensive eyewear that could help her see.
“First, my Mam saw the eSight glasses on the Ellen deGeneres TV show and then one of the YouTube users I subscribe to, who is visually impaired, tried them and said they were very good. So I started researching them and they had a list of conditions they can help on their website and my conditions were there.
“But then we discovered I’d have to go to the States to get them and that would be a big expense on top of the $10,000 to $15,000 they cost.
“Then we found NuEyes, which are very similar glasses, and we thought they were a better fit for me expense wise, travel wise and quality wise. They have representatives in Europe and they cost around £6,000 (€7,000), which is still a lot of money on top of the money that goes towards managing my pain.
“I set up the Go Fund Me page to help raise the money and I feel guilty about asking for help because I’m not completely blind, I can see a bit but I do have a condition that impairs me and holds me back.
“The glasses aren’t going to cure me but they’d really help in school, kind of like the way some people have reading glasses, I suppose. I think they’d give me a chance at doing what I want to do because if I can’t see, it’s really difficult. Though my Mam always said I can do whatever I want and be whatever I want to be, it’s just about finding a way.
“I’d really like to get the glasses before I sit my Junior Cert but if I don’t get them and I don’t do well, I’ll probably move on in school anyway because my teachers have even said, that if it wasn’t for my condition, I’d probably be a straight A student.
“I love school and I take things in but my vision is really holding me back.
“One of the biggest challenges of living with a vision impairment is getting people to understand. A lot of people think you’re either blind or you’re not, they don’t understand the in between.
“That’s why I want to raise awareness and help other young people like me with vision impairments feel more confident. There’s no point in hiding or downplaying your condition, you just have to accept it and live your life fully and deal with it.”
To support Shannon’s NuEyes eyewear fundraising campaign visit www.gofundme.com/striving-to-see