North-east couple tell of hope after baby Caleb diagnosed with cystic fibrosis

Caleb Thorburn
Caleb Thorburn

A north-east family today urged others not to suffer in silence after their baby son was diagnosed with a genetic disorder that has no cure.

Jo and Stuart Thorburn, from Turriff, were devastated to find out that their first baby Caleb had cystic fibrosis (CF).

Caleb having a wee nap with mum Jo

The genetic condition affects the lungs, digestive system and other organs and affects the cells that produce mucus and sweat.

Stuart, 29, a field supervisor offshore and keen rally driver, said sharing their experiences with family and friends had helped them deal with the devastating diagnosis.

Caleb, who is five months old, is now on constant medication to help him combat potential infections that could damage his lungs.

Since the diagnosis, Stuart has embarked on a £10,000 fundraising drive for the Butterfly Trust, a charity which helps families throughout Scotland with CF-related issues.

So far he has raised £2,500 for the Butterfly Trust through motor sport rally events.

And, thanks to his friends, a charity boxing night before Christmas raised more than £6,000, taking him close to his £10,000 target.

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Stuart said the diagnosis came out of the blue when Caleb was just three weeks old.

He said: “When we were in hospital after Caleb was born everything was fine and everything was happy.

“They do a blood test to check for the nine major conditions and CF is one of them.

“After three weeks the nurse phoned our house and asked if we were in and that they needed to come see us.”

Caleb Thorburn with dad Stuart

He said the news “devastated” them both and had repercussions for other people in their family.

“I didn’t know anything about cystic fibrosis,” Stuart said.

“We had to tell our family and if anyone was trying for a baby they had to stop because CF runs in the family.

“After we found out, for a week or two I was kicking myself. Neither of us knew we were carriers of CF.

“I was quite angry and depressed with the whole situation.”

However, since learning of the diagnosis, Jo, Stuart and Caleb have been helped by the Butterfly Trust, as well as family and friends.

Although the condition currently has no cure, thanks to breakthroughs in medicine it can be managed.

Stuart says despite having CF Caleb is a normal baby boy.

“He is a bit heavier than an average baby – 19lbs – and he’s quite heavy for a CF baby because normally they struggle to put on weight because they don’t get as many nutrients.

“He’s on medication just now which helps him to digest food. Every CF person has to take it with their meals.

“He’s always smiling. He is really strong.

“He isn’t crawling yet but he’ll stand up on his own and have this massive grin.

“He also has this bouncer that my mum and dad got him and he loves that.

“We can put him in it for hours and he’ll bounce like mad and have loads of energy.

“It does help with CF, the more he can punish his lungs the better.

“A lot of people with CF will do swimming or marathons and do as much as they can to help with the condition.

“Lung function will go down every year but if CF people can look after their lungs and eat the right food it can be managed.”

Stuart offered advice to other parents who might be dealing with a CF diagnosis.

He said: “Try not to stress about it too much. I would urge people to get in touch with the Butterfly Trust and there is also the Leanne Fund.

“Just talk to people about it. I wouldn’t try to hide it. The support we have had is unreal.

“It has really helped.”

After hearing about his bid to raise £10,000 for the Butterfly Trust, Stuart’s friends Jordan Nicol, Jonathan Towler and Terry Lindsay helped organise a charity boxing night in Aberdeen.

The event, at the Sunnybank Club, featured six boxing matches and an auction.

Jordan said: “When we heard about Stuart’s son having cystic fibrosis we wanted to do something to help him raise money and awareness for the charity.

“He was looking to raise £10,000 and with our boxing event we were able to sell out 180 tickets, raising thousands to help.”