James’s dad dreading his first day at school

THE father of a little boy with a rare genetic disorder has admitted he is both terrified and excited as his only child begins school next week.

Brave James Keyes has suffered from Aperts Syndrome, a condition that affects just one in almost 200,000 children in Ireland. The condition causes extreme pressure on James’s cranium and has caused his face to look disfigured.

However the fact that James is even starting school at St Laurence’s National School in Greystones, Co Wicklow, is a wonder in itself.

When he was born at Holles Street Hospital on November 22, 2005, surgeons told his devoted dad Neal and mum Eilo that he may not even survive.

But after no less than 61 surgical procedures, including the complete reconstruction of his face, happy-go-lucky James has reached his milestone.

Neal, who gave up a career in IT to be a carer for his son, admits he is experiencing a range of emotions from fear to excitement as his son puts his schoolbag on his back for the first time.

“I’m feeling so many different emotions but I would be lying if I didn’t say I am fearful about how other children will react to James.

“Children are children and I understand that but I am terrified just thinking about it. But there is a buddy system in place which sees an older child look after the new children coming in.

“I know he is going to be fine because it’s a great school but we just can’t help worrying about him,” he said.

Neal’s fears are well-founded after one shameful episode at a swimming pool which brought home to the Keyes family just how ignorant people can still be.

He was left shocked when a woman came over to her son who was playing alongside James and took him away telling him not to be playing “with that freak”.

Neal says he was outraged but consoled himself in the knowledge that James will always be safe and loved unconditionally by his family. “I was livid so I took Neal out, dried him and then placed him down in front of the same child in the common play area.

“His mother came along again and took him away. That’s just the way it goes. I can’t change people’s attitudes but I can try to make James’ life a normal as possible.”

One of James’s many operations included a spell at Temple Street Hospital in May 2007 with the plastic surgery team who released his ‘webbed’ hands which took over six hours. James’s progress has allowed Eilo to remain in psychiatric nursing and Neal has gone back to college as a mature student and will be starting his second year of psychiatric nursing in September.

He is especially giddy this week as he faces a bit of a dilemma about who to shout for when his mum’s beloved Donegal face his dad’s Dublin team in the All-Ireland semi-final at Croke Park this Sunday.

“Apart from his physical appearance, James is just an ordinary little boy in every other way.”