Seven-year-old Cardiff twin needs heart transplant after rare diagnosis

A seven-year-old twin boy from Cardiff needs a heart transplant after being diagnosed with a serious heart condition.The Cardiff schoolboy is now under the care of Great Ormond Street Hospital in London and is on the heart transplant register.Billy Manley has a rare condition known as restrictive cardiomyopathy. The diagnosis has been a shock to the whole family and especially his twin Tommy who has taken on the role of protector, said mum Rebecca, 44.But she is relieved to finally know what is wrong with Billy, who has always been less active than his twin and prone to breathlessness which was originally diagnosed as asthma.“It was a big shock. I have always known something was wrong with Billy. There was a big difference between the two boys growing up. Tommy is very active and Billy is more quiet.“When I walked with them Billy was always a bit out of breath.”

When the Fairwater Primary pupil was three doctors thought he had asthma but that wasn’t diagnosed until he was five.

The little boy was then given asthma pumps that sometimes worked but often didn’t because the problem was really his enlarged heart pressing his lungs.“I kept taking him back and forth to the doctor because he got so out of breath and I was concerned he had chest infections,” said his mother.The breathlessness got so bad when Billy was three that his lips went blue and the GP sent him to University Hospital Wales in Cardiff for tests.An ECG test at the time didn’t show anything, or it wasn’t spotted because his condition is one in a million, said Rebecca.

Taking her son back to UHW four months ago Rebecca was told the heartbreaking diagnosis. She was told there is no cure and Billy needs a heart transplant.“They took all his history and the consultant took two X rays and found an abnormality. So they arranged another ECG and echocardiogram.”Billy's condition makes the bottom of his heart muscle stiff so it can’t pump blood around properly. Because there’s no room for blood at the bottom of his heart, it goes to the top and enlarges his heart. That then puts pressure on his lungs which makes him out of breath.Now Rebecca knows what is wrong she said she feels guilty for trying to get her Billy to be more active in the past.“I have got mum guilt for always saying to him 'come on, you can do it' when he was ill. He gets cold and has no energy and eats hardly anything. It’s heartbreaking.“I think I am still in shock from the diagnosis. Billy has been taking it all in his stride and has been amazing and thankfully we are aware of it now.”She said Billy's twin Tommy misses him when they go for appointments at Great Ormond Street in London with the boys' dad Gavin.“I think Tommy feels a bit left out because he could only come to Great Ormond Street with us once, He’s like a protector. When he came to for the first time he sat with his arm on his brother’s chair and said 'I’ll look after him'. He wants to protect him.“When he got back from visits he hugged him and he always wants to Facetime him when he’s away.“They aren’t identical twins but they are close, although they argue like any siblings.“Billy is into music and playing Fortnite and Fifa and Tommy plays football for Ely Rangers.

After the diagnosis Tommy was sent for tests too but has had the all clear. Rebecca and Gavin have also had genetic tests but nothing was found.Throughout the diagnosis and hospital visits Rebecca has carried on working full-time, studying part-time for a degree at the University of South Wales as well as looking after her boys.“I think coping and keeping going is all I can do. In the daytime I am strong bit in the evenings going to bed and thinking about it I am heart broken," she addedThe mum-of-two is studying for a degree in Quantity Surveying and Commercial Management at USW and has just collected an award after being named 2020’s Most Promising Quantity Surveyor by the Civil Engineering Contractors Association (CECA) Wales. She now works an the new South Wales Metro site in Taff’s Well.She vowed: “I just have to keep going and I get lots of support. The boys’ school has been amazing. Since the diagnosis I’ve also had lots of support from the staff at USW. They do all they can to help me out.”Rebecca has started a fundraiser to help Billy during his treatment and wait for a heart transplant.