Bradford family’s appeal to help son with rare condition

But despite his cheeky grin and adventurous nature Jaxon cannot keep up with boys his age, nor his sisters and brother.

Jaxon, who is four next month, was born with a rare genetic disorder that affects his skin, face and heart and prevents him taking part in sports.

The condition, known as Leopard syndrome, is so rare that only around 200 people in the world are known to have it.

It causes the muscles in the heart wall to thicken and become stiff and a narrowing of the pulmonary valve which pumps blood from the heart to the lungs.

Jaxon cannot run around or do football and is also at risk of sudden death.

Despite this, he is a happy
and loving boy who just gets on with life, says his mother Heidi Green, 39, of Queensbury, near Bradford.

“He is mischievous. I suppose we let him get away with more because we don’t know what tomorrow will bring,” she says.

“He wants to do everything that his brother and sisters are doing. He can’t walk a long way but he goes to nursery two and a half days a week and nothing fazes him.”

His nursery at Northowram Primary in Halifax has since bought a defibrillator and trained staff in case Jaxon becomes ill.

Jaxon’s mother and grandmother, Pat Bingham, 69, are now in the middle of a challenge to swim the equivalent of the English Channel as part of Leeds-based charity Heart Research UK’s fundraising challenge and to raise awareness of their son’s heart condition.

They are taking part in the Swim the Channel challenge and will do 1,770 lengths of their local swimming pool in 10 weeks to complete the 22-mile challenge.

Miss Green said: “I want to raise funds in the hope one day there will be a cure for his hypertrophic cardiomyopathy before it is too late. It would be a miracle and mean he could do ‘normal’ things with his siblings that people take for granted. It’s good to raise awareness too as people don’t understand, often thinking heart disease only affects older people or those who don’t exercise or eat healthy. The bonus is we get fit and healthy too.”

Jaxon was diagnosed with Leopard syndrome soon after he was born when a heart murmur was picked up. Leopard is an acronym, with each letter standing for an abnormality associated with the disorder.

Jaxon’s brother and three sisters were tested to see if they had inherited the condition.

It was an anxious time for all the family.

“I was beside myself with worry,” said Miss Green.

“I was waiting 13 weeks for the phone to ring. I was elated that none of them had got it.”

The family do not know what the future holds for little Jaxon.

“He could live a long and happy life or he might not reach adolescence,” his mother says. “As he gets towards adolescence it gets more dangerous.”