Teenager with 'Muamba' heart defect has five-inch defibrillator fitted inside his body (From The Bolton News)

Teenager with 'Muamba' heart defect has five-inch defibrillator fitted inside his body

1:31pm Saturday 16th March 2013 in News

A TEENAGER with a fatal heart condition is one of only two people in the UK to be fitted with a defibrillator under his skin.

Blake Calverley suffers from hypertrophic cardiomyopathy, the same condition which caused former Bolton Wanderers' Fabrice Muamba’s heart to stop for 78 minutes during an FA Cup tie.

Doctors told Blake that with-out the machine, which measures around 5ins by 3ins (12cm by 8cm) he would die.

Now the 18-year-old has learned he will eventually need to have a heart transplant and is urging others to sign up to the organ transplant register.

Blake said the device had already gone off a number of times.

He said: "I am too scared to even go out alone in case I start to feel funny and my defibrillator goes off.

"The doctor who fitted it under my skin said without it I would almost definitely be dead by now.

"I have been told there is only one other person in the UK who has the same device as me.

"When it goes off there is no warning. It feels like a horse has kicked you in the chest.

"I carry an organ donor card now as do my family and I appeal to others to do the same."

Blake, who this week became a father to 9lb 13oz Logan, was diagnosed with the condition on January 5, 2011.

He was visiting the doctor for a regular diabetes check-up when medics became concerned as he had been suffering chest pains.

The teenager was told his heart condition had caused him to develop Danon Disease, also known as ‘the silent killer’ as most sufferers die from the condition in their sleep before being diagnosed.

The disease weakens muscles and sufferers don’t usually live beyond the age of 19.

In a bid to save the former Broadfield Specialist school pupil, doctors fitted Blake with an Implantable Cardioverter Defibrillator (ICD) under his collar bone - the same device given to Muamba.

The device releases an electrical charge if it detects a heart malfunction.

But 11-months later doctors at Royal Manchester Infirmary replaced the battery operated device with a SICD defibrillator, which is much stronger It is believed to have only been given to two people in the UK, Blake and a person in Hull, and is attached to the heart by wires.

Blake’s mum Dawn Calverley, 47, of Sandy Lane, Accrington, said: “Doctors have told us Blake’s condition is incurable.

“The defibrillator gives us piece of mind that there is something to restart his heart if it randomly stops when no one is around.

“But he is still scared. He has even stopped leaving the house because he doesn’t want to get a shock when he is alone.

“It’s horrible not being able to make him well.”

Blake, who dreams of becoming a professional chef, has been forced to give up playing football and riding his bike.

The former St Christopher’s Sixth Form pupil said: “In a way I am scared of the thought of having a heart transplant.

“But if all goes well I have been told I will be able to play football again and get back to normal in general.

“I have been told my condition is going to be monitored over the next six months and if it continues to deteriorate I will be placed on the transplant list.

“This time in a year I could have a new heart.”

Blake’s mum and his six brothers and sisters have all had to have their hearts tested after he was diagnosed with the genetic disease. Baby Logan will also be checked.

Dawn, the cousin of Blackburn Rovers midfielder David Dunn, said: “The main reason we have decided to speak out is to try and encourage more people to join the organ donor register and to highlight the condition.

“If more people join the register, more ill people will have a better chance at living their lives.”

Health expert Dr Tom Smith said: “What happens in this case is the heart muscle grows bigger and bigger but not necessarily stronger and the blood supply does not necessarily grow alongside the muscle.

“It is a very serious condition and usually kills the patient.

“There are treatments that will stop the overgrowth of the heart muscle and hopefully keep the patient alive.

“But it is also very, very important people join the transplant register.

“People who have this disease are almost always young people between the ages of 15 and 35, and a transplant is sometimes their only chance.”