Brave Blake’s diagnosis ends family mystery

Two-year-old Blake Taylor with his mum Hollie Evans. Picture Jonathan Gawthorpe

Blake Taylor’s family was told he had the incurable genetic illness, which mainly affects the lungs and digestion, following a heel prick test when he was just three weeks old.

The family investigated the condition to find that Blake’s grandmother, 50, was born with a lesser form of the disease which had earlier been diagnosed as chronic asthma and caused her decades of issues including several episodes of pneumonia.

Two years on, the youngster’s battle with the disease continues as he faces daily physiotherapy and is on regular medication.

Now his parents have set up a fundraising campaign to raise £8,000 for a special physio vest that they hope will help alleviate his symptoms.

His mother Hollie Evans, 28, of Cross Gates, Leeds, said: “My mum doesn’t have the same mutation as Blake but she’s have had it for 50 years without proper diagnosis.

“Blake’s got an older brother who doesn’t have it and he’s questioning why he’s got medicine and his brother doesn’t.

“He takes it fine but you can tell he’s questioning it.

“We tell him he’s a super hero and that helps us give him the medicine – we say he’s got special powers.”

The family has rallied behind Blake and launched a fundraising campaign to pay for a vest which will help to loosen the mucus in his lungs.

They have launched an online donation page, which has so far raised nearly £800, and placed donation tins in four shops in Leeds.

Ms Evans said: “He’s very boisterous and constantly on the go, which is a good thing as the  more he exercises the better, but sometimes he literally doesn’t sit still.

“I try not to think too much about the future as when I do it’s not nice.

“We take each day as it comes. I’ve just come to terms with it – it’s not nice to think about.”

Cystic fibrosis is the result of a single defective gene.

It causes the internal organs, especially the lungs and digestive system, to become clogged with thick sticky mucus resulting in chronic infections and inflammation in the lungs and difficulty digesting food.

The disease can reduce the life expectancy of those afflicted by it, although since the 1950s the average lifespan of sufferers has increased by decades.

Sadly, there is no known cure

However, the symptoms can be treated to give sufferers a better quality of life and antibiotics can clear up infections caused by the accumulation of mucus in the lungs.

There have been some trials of gene therapy but early results have been disappointing.

It is estimated that one in every 2,500 babies born in the UK will be born with cystic fibrosis and there are more than 9,000 people living with the condition in this country.

As a genetic disorder, people cannot catch or develop cystic fibrosis and most cases are diagnosed soon after birth.

To donate to Blake’s appeal visit www.justgiving.com/blakesvest.