Jaxon Green-Moore is one of 200 people with a rare heart condition, but now he is leading a Christmas appeal. Catherine Scott reports
A six-year-old boy from Bradford is leading a charity’s Christmas campaign to raise money for research into heart disease, supported by some of showbiz’s biggest celebrities.
Jaxon Green-Moore, from Queensbury, Bradford, is one of just 200 people in the world – and believed to be the only one in the UK – to have Leopard Syndrome, a very rare condition that affects the skin, face and heart.
As a result Jaxon has hypertrophic cardiomyopathy where the muscles in the heart wall become thick and stiff, and pulmonary stenosis, a narrowing of the pulmonary valve which pumps blood from the heart to the lungs.
Now Jaxon is leading Leeds-based charity Heart Research UK’s Sing for your Heart Christmas charity appeal – a social media campaign asking members of the public and celebrities to ‘sing, donate and nominate’ by uploading a short video of themselves singing on social media, texting SING to 70144 to donate £3 and then nominating up to three others.
Celebrities supporting the campaign already include Strictly Come Dancing stars Aston Merrygold and Brian Conley, Britain’s Got Talent’s Alesha Dixon, Loose Women Linda Robson, Stacey Solomon and Nadia Sawalha, panto favourite Christopher Biggins, and ITV’s Good Morning Britain’s Piers Morgan.
Irish boy band Boyzone, who Jaxon nominated to take part in the challenge, have posted their video on social media: https://twitter.com/therealboyzone
Jaxon’s mum, Heidi Green-Moore, said: “When Jaxon was diagnosed, the scariest part was that his heart was already failing and we didn’t even know. His liver was enlarged and his heart was already failing.
“Heart Research UK is important to us as a family because at the minute, there’s no cure for Jaxon. Research is hope”.
Jaxon was six weeks old when doctors notice he had a heart murmur and he was referred to Halifax Royal Infirmary where his parents were told he had heart failure.
Jaxon’s dad Rob said: “Until they got his medication right he had heart failure five times. The first 12 months of his life were hell, but we tried to carry on best we could.”
Around seven million people are living with cardiovascular disease in the UK and many have been helped thanks to pioneering medical research.
However 70,000 people die from coronary heart disease every year – the UK’s single biggest killer. More research is needed to help prevent these deaths and to help families like Jaxon.
Barbara Harpham, Chief Executive of Heart Research UK, said “Heart disease affects all ages, but with research we are helping people live healthier, happier, longer lives.
“It doesn’t matter if you’re a good singer or a bad one, a celebrity or an enthusiastic amateur, Sing for your Heart will get you in the festive mood and spread some Christmas cheer as well as raise money. Sing, donate and nominate and know that the money you raise will help fund research to give children and their families a brighter future”.
As for Jaxon, his sisters Courtney, Tegan and Tailla, brother Zachariah and his mum and dad they take every day as it comes.
“Jaxon’s heart condition has changed our perspective on life as a family. We try to take each day as it comes,” says Heidi. “Jaxon does get frustrated sometimes because he can’t do what the other children do.”
Jaxon’s school in Halifax has trained staff to use a defibrillator and purchased a device so they can help should Jaxon become ill.
The condition is so rare that there is little specialist knowledge available and no support groups for parents to exchange information. The expectation is that the risk of problems will increase as Jaxon reaches adolescence.
LEOPARD is an acronym made up of the primary characteristics of the condition:
L. Lentigines, which means Jaxon has lots of freckles;
E. Electrocardiographic conduction defects, a heart defect;
O. Ocular hypertelorism or widely spaced eyes;
P. Pulmonary stenosis which effects the flow of blood from the right side of the heart;
A. Abnormal genitals;
R. Retarded growth;
Upload a short video of yourself singing on social media, texting SING to 70144 to donate £3 and then nominating up to three others.
In the UK one in every 180 babies is born with some form of congenital heart disease. Heart Research UK is a visionary charity that has been helping hearts since 1967. It funds ground-breaking medical research that benefits patients as soon as possible. Over the last 50 years the charity has funded over £24m on medical research in hospitals and universities across the UK and £2.1m on innovative community-based lifestyle projects.