When the Port Pirie youngster was only three months old he was diagnosed with cystic fibrosis.

Since then his parents, Ryan Fowler and Tara Johnson, have been in a constant struggle to keep him healthy and, most importantly, alive.

Cystic fibrosis is a genetic disease that affects a number of organs in the body, especially the lungs and pancreas, by clogging them with thick, sticky mucus.

It is the most common life-threatening recessive genetic condition that affects Australian children.

Symptoms can include poor weight gain, troublesome coughs, repeated chest infections, salty sweat and abnormal stools.

At present there is no cure.

“When we were told Blayde had this condition, we were devastated, but we did not have a full understanding of what it really meant,” Mrs Johnson said.

“Having a child with CF means you have to spend more on nappies, wipes and he needs special tinned baby food, which costs a lot.

“He has so many medications he needs to take every day; some he will take for the rest of his life, or until they find a cure.”

Blayde is the only person with this condition in Port Pirie at the moment.

“Sometimes even to get his medication here can be a challenge as he is the only one in town with CF,” she said.

“We also need to take him to Adelaide every month for a doctor’s appointment, but since we do not have a car we depend on other people to be able to drive us.

“Blayde is not allowed to be in a bus with other people because he can get really sick, so we have no choice.

“We also need to keep him away from crowded places and from other children.

“It gets harder on his bigger brother Aidan because we get too isolated.”

When times get really tough on the family, they keep their hopes that one day there could be a cure for their son.

“Nowadays we have 37 as the life expectancy for people with cystic fibrosis when in the seventies it was only five years, so there has been progress,” she said.

“But our biggest fear is definitely losing him!”

What can you do to help Blayde and his family?

Pick up The Recorder's Thursday, January 19 edition to find out.