Three Launceston brothers living with cystic fibrosis

Malcolm Atkins standing in a courtyard
 

Malcolm Atkins has four children. Three of them are living with cystic fibrosis, meaning the family has had to adapt to live with the condition.

“The first one we knew nothing about it, so it was a complete educational process for us to find out what it was,” Mr Atkins said.

“You have to be able to adjust your life to be able to do the constant physiotherapy required to keep them going.”

Mr Atkins said one of the most challenging things were the questions that came from his children about the diagnosis, asking, “Why?”

“That’s the hard one to answer or to try and explain when they’re young, as to how it occurs and how they’ve got cystic fibrosis,” Mr Atkins said.

“We had no knowledge of what it was and how it occurs and how we, as parents, created a cystic fibrosis child.”

Son’s condition deteriorates

Until the start of this year the three boys had their health under control, but Mr Atkins’ second oldest son, Scott, started to deteriorate and had to be admitted to hospital in Melbourne.

“His lung capacity has gone down, he’s got one lung that doesn’t work anymore. It’s completely blocked so he’s operating off one lung,” Mr Atkins said.

“This year he’s just gone downhill. The lung has given up working as hard as it has to do to maintain a good capacity for them.

“It’s dropped down to 18 per cent.”

The quality of life is what he’s after, so at the moment he’d have zero quality of life.

Malcolm Atkins

 

Scott is now undergoing tests to find a suitable lung donor based on things like his height, physical size and blood type.

Mr Atkins said the time waiting for a transplant would be more anxious for him — knowing that he really cannot do anything to assist would be difficult.

“Well, you can’t help physically, you can just help by support. You’ve just got to support Scott as he goes through it,” Mr Atkins said.

“He’s a pretty resilient young fella and he’s had times where he’s…had to cope with the fact that he’s got to have a lung transplant.”

According to Mr Atkins, his son knows the risks of the transplant but also understands there is no other option at the moment.

“The quality of life is what he’s after, so at the moment he’d have zero quality of life…with 18 per cent lung capacity,” Mr Atkins said.

“[There is] a chance to be able to lead a reasonably normal life for many years to come if it all works well and goes the way we all hope it will.”

Mr Atkins was confident Scott would follow the doctor’s orders and give himself the best chance of recovery.

Crowd funding helps family with costs

While Scott has been in Melbourne, an online crowd funding campaign has raised more than $20,000 dollars toward the costs of staying away from home for up to six months.

“We’re just astounded that this has happened and that they’ve done it for him,” Mr Atkins said.

“The response has just been quite humbling.”

Scott and his partner Hayley will need to take time off work while staying in Melbourne, making the crowd funded money even more valuable.

“It’s such a relief for them to take away some worries,” Mr Atkins said.

After speaking with other lung transplant recipients, Mr Atkins said his son should be looking forward to the feeling of the first breath.

“They say that when you’ve had it done and you come out of recovery, the first big breath that you take is like heaven,” Mr Atkins said.