Help give the children a bit of breathing space

Jun 2 2008 by Paul Loraine, The Journal

Cystic fibrosis life expectancy is 31

The North of England has only limited equipment for the management of children with sleep and breathing disorders.

Ours is also the only region without the means of performing lung function measurements in children.

Respiratory diseases cause 13% of all deaths in the UK but receive less than 3% of research funding.

Globally, respiratory infection is the biggest single killer of children, with more than two million youngsters dying from pneumonia every year.

It is now common for babies born more than three months prematurely to survive but many of these babies are left with significant chronic lung disease.

Cystic fibrosis is the UK’s most common life-threatening inherited disease and affects more than 8,000 people.

Each week, five babies are born with cystic fibrosis and three young lives are lost to the condition.

Average life expectancy at present for someone with cystic fibrosis is around 31 years.

Case study

LAUGHTER is never far away when you’re in a room with brother and sister Demi and Raegen Froggatt.

Their youthful pranks are performed with such frequency that it is easy to forget the seriousness of their shared condition.

Demi, 11, and Raegen, nine, have cystic fibrosis, a condition for which there is no cure.

It affects their lungs and digestive system, which become clogged with thick mucus, making it difficult to breathe and digest food.

To manage their condition, the pair both have a portacath installed under the skin in their chests, a device which allows their mum Margy to administer drugs at home.

As well as regular physio, they also breathe through a pep mask for two 15-minute sessions a day to loosen the phlegm and make breathing easier.

Demi attends Tynedale Middle in Cowpen, Blyth, while her younger brother is at nearby Morpeth Road First School, but they both miss 50-60% of their schooling through a combination of appointments with the doctor and illness.

Demi suffers from more severe bouts of breathlessness than her brother but still pursues a number of hobbies in which breathing is a factor.

"I play the trombone at school," she said. "Sometimes it’s hard with my breathing but other times it’s all right. I really like swimming as well."

Meanwhile, Raegen said he never really thinks about his condition: "I like sports like climbing and basketball. I don’t worry about it but sometimes it is easy to get out of breath."