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The Brave Boy Who Inspired His Classmates; Heart Disease Speech That Changed Their Lives

Posted on: Thursday, 9 March 2006, 12:00 CST

By Nigel Gould

A brave Ulster boy suffering from an incurable heart defect stood up in front of his Primary One classmates to explain why he could not run, play football and rugby like they could.Rory Gracey, now six, was just four when he decided to tell his school friends all about his congenital hypo-plastic left heart syndrome condition.The pupil of Downey House, Methodist College, Belfast, simply told his teacher his class pals needed to know.Mum Denise said: "It was his decision. He had just come back from Birmingham Children's Hospital where he had the third of a three-stage operation."There was a bump on his chest from all the surgery he had."He stood up while all the other pupils sat around cross-legged and told them how the doctor fixes his heart when it gets sick."He cannot run or play football and rugby and games

. The children are totally accepting and they are his little helpers."Denise and Rory were yesterday attending an international conference at Malone Lodge on the care of children born with congenital heart disease.The event, the first of its kind in the UK, was hosted by the Department of Paediatric Cardiology and Psychology at the Royal Belfast Hospital for Sick Children. Some 140 delegates from Europe, North and South America will attend. During the conference, the launch of the DVD, Surviving Congenital Heart Disease: The Parents' Stories, will bring to light how families cope with congenital heart disease. The aim is to inspire hope, reduce a sense of isolation and help provide a road map for coping with future challenges associated with the disease. Denise said:"Rory was born with this condition. You can choose palliative care or a three- stage operation. There is no cure."Lots of parents go down the palliative route when they are faced with the choice. But my advice is to take a long and hard look at this. We have had no regrets. The only option eventually is a heart transplant."Consultant Paediatric Cardiologist, Dr Frank Casey, said: "Our research shows that this new programme of psychological intervention during the very stressful period after the birth of a baby with congenital heart disease can help parents cope better and lead to an improved outcome for both them and their baby."

Source: Belfast Telegraph

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