THE mother of an 11-year-old boy who suffers from a debilitating heart condition linked to his Down’s Syndrome is campaigning to raise awareness of the disease.

Jenner Park Primary School pupil Mason Jones was born with a Congenital Heart Defect (CHD) – a common co-morbidity of Down’s Syndrome. Because of the defect, he has a weak immune system that has seen him contract pneumonia five times.

Mason, of Clos yr Harbwr, Barry, had a mechanical valve fitted to his heart last year, although it is likely that he will need a replacement heart in the future.

February 7-14 is CHD Awareness Week in the UK, and Mason’s mother Sam Fry, 28, says she wants to see the Welsh Government do more to improve understanding of the condition.

“A lot of parents don’t know anything about it,” said Ms Fry. “One in 100 children are born with heart problems and only a quarter are diagnosed at birth.

“There’s a test, called an oximetry test, that you should have when you’re born. It tells you if there are any heart problems, but not every hospital does it.

“I’ve met three families (with children who have a heart condition) recently and they don’t know anything. They’ve had no leaflets, they’ve had no information since their babies were born.”

A Welsh Government spokeswoman acknowledged better information was needed, but said it was taking steps to ensure this.

“The Heart Conditions Delivery Plan sets out a number of actions to improve services for patients (with CHD), including the need for better information. The Welsh Health Specialised Services Committee are working with service providers to achieve this.”

Ms Fry intends to host her own awareness event next month to raise money for Bristol Children’s Hospital’s cardiac ward, where Mason has regularly been treated. She will also be placing red stones around Barry, containing written facts and messages about the condition.

She says she gathered most of her ideas from international websites, and wants to see the condition attract a bigger profile in the UK.

“Since Mason’s been born, we’ve not really had the help. We only started doing stuff like this in the past couple of years because we didn’t know anything about it, and not a lot of others know either.

‘A Day for Hearts’ is being held in BarCocoa on February 18.