"No point in asking why, all you can do is carry on"

Samson List is a typical boy who loves playing with his mates, but he has the incurable and potentially fatal disease Cystic Fibrosis.
Samson List is a typical boy who loves playing with his mates, but he has the incurable and potentially fatal disease Cystic Fibrosis. Nicola brander

GRIEF. Shock. Horror. Disbelief. Why?

A sea of emotions washed over Katrina List as she struggled to cope with the news every parent dreads.

Her precious first-born son Samson came into the world with a deadly disease in his fragile infant body.

As he grew inside his mother's womb a set of cystic fibrosis genetic markers formed.

One in four children of carriers of the CF gene is likely to be born with the disease which causes serious lung infections that permanently damage the delicate tissue; diabetes; and problems with the pancreas and liver.

Without a lung transplant, most CF patients will die by the time they turn 40.

Shaken to the core, the couple found support and strength in their family, friends and faith.

"Without a doubt you wouldn't be human to not question the 'why?'" Mrs List said.

"The why us? The why me? The why him?

"But I think it's only thanks to having a faith that you get over that hurdle.

"We don't question it any more."

The eight-year-old Suncoast Christian College pupil is like any kid his age.

He loves wake-boarding with his pharmacist dad Deon, hugging his school teacher mum, sleepovers with his mates and playing with his sister Asher, 10, and little brothers Noah, 5, and Angus, 3.

But hospital stays, intensive daily physiotherapy and medications punctuate his childhood like black markers on a growth chart.

Samson has spent 10 weeks in hospital battling lung infections since he was six.

"It's really hard because I'm a mother of four. Their dad's at home with the other kids and I'm in Brisbane (at the Lady Cilento Children's Hospital) for the entire duration," Mrs List said.

"They've (Samson's siblings) still got to have a normal life at home."

With 5am starts and an hour set aside each evening for extensive physiotherapy and medical routines, Samson is slowly getting used to being different to all the other kids in his life.

Cystic Fibrosis Queensland and Lady Cilento's nurses and doctors provide ongoing support and care for the List family.

And Mrs List repays this dedication by holding fundraisers for CF Qld each year.

The next fundraiser will be on April 2 at her son's school.


Topics:  cystic fibrosis

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