A 10-year-old boy has been through numerous operations in an effort to save his sight from a rare congential defect, writes Hélène Hofman
When Michael O'Connor was born his parents knew something was not quite right. His eyes looked cloudy and opaque and he had no iris. Michael had Peter's Anomaly, a rare congenital defect affecting the development of the cornea, making him severely visually impaired.
"At first I thought it was cataracts," explains his mother, Lorraine Kelly O'Connor. "But then we were told he had bi-lateral cloudy cornea and no iris. Suddenly we weren't just dealing with a new baby. There was this added stress, worry and a lot of sleepless nights," she says.
According to Prof Michael O'Keefe, director of the National Children's Eye Centre, where Michael, now aged 10, has been receiving treatment, Peter's Anomaly is far from common.
"In 20 years of surgery here I've only seen about six or seven cases, and we would see about 10,000 patients a year," he says.
Patients with Peter's Anomaly are likely to suffer from a number of other eye-related problems. These include having one eye smaller than the other (microphthalmos), being short-sighted or, in Michael's case, having no iris (aniridia).
By the time Michael was five months old he had his first operation to replace his cornea - the transparent dome covering the eye - and was fitted with his first glasses. Over the next few years, three more corneal transplants - the last of which was in February - and laser treatment, to remove the resulting scar tissue, followed. At the age of five he developed glaucoma, where the eye cannot drain excess fluid, putting pressure on the optic nerve, and he underwent surgery to fit drainage valves.
"We've been in and out of the eye centre for the last 10 years," says Lorraine. "Sometimes I hear them tell other parents to come back in six months and I think 'wow, wouldn't that be great', and then it's my turn and they say 'we'll see you next week'."
Despite needing regular check-ups, eye-drops and treatment, Michael is in fourth class at St Joseph's Boys National School, a mainstream school in Clondalkin, Dublin. In 2004 he won the Weetabix Children of Ireland Award for outstanding achievement in education and plays the piano and accordion for the school band. However, last October, both Michael and his parents, Lorraine and Mike, were faced with a crisis.
"Last year holes began developing in the retina of his right eye, and then one day it detached itself completely," says his mother. "He was watching TV and he was up close to it, but said he couldn't see anything. My husband brought him outside and Michael couldn't even see the cat on the ground. We thought that was it, that it was lights out."
"It's hard to describe," says Michael. "There wasn't much detail, it was bright and dark and then I couldn't see. I didn't know what was happening and I got a bit upset."
After an operation to reattach the retina, Michael regained some of his sight and returned to school. However, he has been using his white cane more often and is now learning Braille. "All the time we're preparing him in case something happens to his sight," says his mother. "It's always good to introduce them to these things when they're younger."
Since he returned to school in January, Michael has received a CCTV monitor with a camera attached from the Department of Education that enables him to zoom into the blackboard and around the classroom. He also has a Braille typewriter and a laptop, specially adapted to his needs, all of which he brings to school every day.
"I take up a lot of space in the classroom," says Michael. "When we have spellings to do I type them into the laptop and the other kids write them in their copy. They say 'you're lucky, you are'. And I say 'I can't help it, I have to do it this way.'"
Although Michael's parents try to make life as normal as possible, encouraging him with his music and drama, there are some things he can't do.
"There's no swimming, no climbing, no jumping - all things that Michael would love to do," says Lorraine. "And I can't just let him out to play with other children because he might be left behind and he wouldn't even know which direction home is," she explains.
"As a result he's become quite self-contained. He's happy with his games and being creative. If he can't do something, we make up for it and find something he can do."
Over the past 12 months Michael has been fundraising for the National Children's Eye Centre. With the help of his parents he designed and sold Christmas cards, organised a raffle and contacted local business for donations. Last month he presented the department with a cheque for €25,000.
"I worry about losing my sight," he says. "My friends always ask me loads of questions about my eyes. They ask me will I ever be able to see properly again," he says.
"We don't know what will happen in future," says his mother.
"However little sight he has is better than none. But we're preparing him in case. All children have potential and we want him to have every chance possible whatever happens."