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COPD

Updated 19 March 2019

Siblings forced to sleep apart and minimise interaction due to deadly cystic fibrosis

A mom has told how a kiss between her two children could prove fatal as both have cystic fibrosis – leaving them forced to sleep apart and unable to even share anything.

A mom has told how a kiss between her two children could prove fatal as both have cystic fibrosis – leaving them forced to sleep apart and unable to even share cutlery.

Sienna Woods, two, and Noah Woods, one, were each diagnosed with cystic fibrosis (CF) shortly after they were born, meaning they’re prone to picking up deadly bugs from each other.

The tots are both a match for Orkambi – a drug which could stop the deterioration of their lungs – which is at the centre of a fierce battle over its cost of £104 000 (R1,7 million) a patient a year.

Parents Shelby Woods (25) and ex-partner Martin Woods (34) are calling for the life-changing Orkambi to be made available on the National Health Service (NHS) to help the siblings.

Constantly watching

“It’s so difficult to stop Sienna and Noah being together,” said mom Shelby, from Burscough, a town in England.

“It makes me sad that they can’t be so affectionate with each other. We allow them to hug but they’re not allowed to kiss because of the cross-infection risk.

“If Sienna is playing with a toy we have to make sure Noah doesn’t pick it up before we disinfect it.

“They have separate branded drinks bottles, cutlery and bowls.

“I have to watch them constantly. They’re not allowed to play in sandpits or jump in puddles because of the risk of spores.

“They’re getting to that age where they want to have a sleepover but we can’t allow them to share a bedroom, which is really upsetting.

“I also try and keep them really clean. I bathe them in the morning separately and then again in the evening to make sure any bugs are washed off.”

Detrimental bacteria

CF is a debilitating, life-shortening inherited condition where people experience a build-up of thick sticky mucus in the lungs, digestive system and other organs.

More than 10 000 people in the UK have it and there’s no cure. Half of the people in the UK with it will reportedly die before they’re 31.

Despite carrying similar DNA, the children grow their own bacteria specific to their lungs and any cross-contamination of that bacteria can be detrimental to the other.

They have to take around eight different medicines a day and make regular visits to the hospital as well as having daily physiotherapy.

Shelby, a receptionist, said three weeks after Sienna was born they were shocked to find out she has cystic fibrosis. She was unaware there were any carriers in her family.

They were told there was a 25% chance Noah would have it too – and then his cystic fibrosis diagnosis was confirmed.

Short-term planning

Shelby said she’s too scared to book a summer holiday over fears her children might not make it every time they get ill.

“Their life expectancy is between 35 to 40 years, but we don’t know from one day to the next what might happen.

“They could be fine and then the next day their lung capacity could drop and that could be it.

“We try not to plan too far ahead – only a week or two.

“Your whole life changes when you have a baby, never mind a baby with CF. It can be difficult to come to terms with.”

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