Sunday 17 December 2017

Brave James's school dream a reality after 61 operations

Stephen Maguire

FOLLOWING 61 operations, starting school should be a walk in the park for five-year-old James Keyes.

But the father of the little boy -- who suffers from a rare genetic disorder -- has admitted he is both terrified and excited as his only child begins school next week.

James suffers from Aperts Syndrome, a condition that affects just one in 200,000 children in Ireland.

The condition causes extreme pressure on James's cranium and has caused his face to appear disfigured.

The fact that James is even starting school at St Laurence's National School in Greystones, Co Wicklow, is a miracle.

When he was born at Holles Street Hospital, Dublin, on November 22, 2005, surgeons told his devoted father Neal and mother Eilo that his chances of survival were slim.

One of James's many operations included a spell at Temple Street Hospital, Dublin, in May 2007, when the plastic surgery team released his 'webbed' hands. The procedure took more than six hours.

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

Mr Keyes, who gave up a career in IT to be a carer for his son, admits he has mixed emotions 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," he said.


"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."

Mr Keyes recalled an episode at a swimming pool which brought home to the family the ignorance that James might face.

He was shocked when a woman came over to a boy who was playing with James and took him away, telling him not to be playing "with that freak".

Mr Keyes said: "I was livid so I took James 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's life as normal as possible."

James's progress has allowed his mother to continue her job as a psychiatric nurse, while Mr Keyes is also studying as a mature student.

"I know parents think their children are full of fun, but James really is. He has been through so much and yet he is never in bad form," said Mr Keyes.

Irish Independent

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