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How life-saving kit goes everywhere with Billy


Wherever 15-month-old Billy goes, so does a life-saving defibrillator and special monitor to check his heart while he sleeps.

Two months ago, the youngster was diagnosed with a rare heart condition and now dad, John Grabowski, and mum, Charlotte Francis, have to keep a constant check on him.

Billy has cardiac fibroma – a benign tumour which measures about 6cm by 4cm – growing on his heart.

His family's life was turned upside down when Billy collapsed suddenly at his Loughborough home in February – and had to be resuscitated.

Charlotte, 26, said: "He looked as if he was having a fit and then was lifeless. Seconds later he had turned blue. It was so scary."

East Midlands Ambulance Service (Emas) paramedic Vince Lowe could not find a pulse and had to shock Billy's heart to get it going.

Charlotte said: "I didn't know if Billy was alive or dead."

He was still struggling to breathe without help when he arrived at Leicester Royal Infirmary.

Charlotte said: "It is all a bit of a blur and because the condition is so rare it took weeks to find out what was wrong.

"An MRI scan in London showed a tumour on the pumping chamber of Billy's heart.

"It was only the third case the consultant had seen and we were told he might die and that the risk of sudden death is very real."

Billy was in hospital for seven weeks and although the condition has been identified, his future is uncertain.

As his heart grows, the tumour might not be a problem, or he may need an operation.

Meanwhile, every time he goes to sleep his parents hook him to a monitor to keep a check on his heart.

They also always have a defibrillator with them, in case his heart stops again and they have to use the machine to "shock" him and restart it.

Charlotte said: "It does feel as if we are still living on the edge, but I don't know what we would have done without the paramedic who saved his life.

"We have been overwhelmed by support from everyone."

Dr Kate Linter, a children's cardiologist at Leicester's Glenfield Hospital, said: "This condition is very rare in this age group and Billy's is the first case I have seen.

"The paramedic certainly saved his life and we are now keeping a close eye on him.

"He is on medication, but at the moment we don't know exactly when or what treatment he will need."

Mr Lowe, who has worked in the ambulance service for 39 years, said: "When I saw Billy it was clear that he was a very ill child.

"I am delighted he is now back home with his parents."

The defibrillator has been donated by the Leicestershire charity, Keep the Beat.

Adam Tansey, from Keep the Beat, said: "We are delighted to be able to help patients in this and hope that through the work we do we can continue to support many other families like Billy's."

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