Help give the children a bit of breathing space

TODAY sees the launch of a Journal-backed campaign to raise funds for a world-class childhood respiratory unit in the North East.

Dr David Spencer

TODAY sees the launch of a Journal-backed campaign to raise funds for a world-class childhood respiratory unit in the North East.

Led by Dr David Spencer, a Newcastle-based specialist in children’s breathing problems, the Puffin Appeal is aiming to raise £2m to improve the lives of children with conditions such as cystic fibrosis, severe pneumonia and asthma.

The issue of respiratory care is particularly pressing in the region as the North of England has some of the highest reported rates of childhood asthma in the world.

Breathing disorders account for almost half of the acute admissions of children to hospitals in the region and resources are being stretched to the limit.

At the moment, children from as far away as Scotland and Ireland travel to Newcastle for specialist care.

Demand from desperately-ill children is beginning to put pressure on the current set-up and with childhood services being divided between the three Newcastle hospitals, patients face further upheaval at an already difficult time.

Sick youngsters may have to move between units for treatment, causing delays and distress for both patients and families.

The Puffin Appeal is setting out to change this.

A new building is currently under construction on the Royal Victoria Infirmary (RVI) site in Newcastle and space has been set aside for a children’s respiratory unit. Dr Spencer, a consultant in paediatric respiratory medicine, said: “One of the aims of the appeal is to allow us to deliver a more effective and much more efficient service.

“We are going to have designated space for a respiratory department within the new children’s unit. All the specialists are going to be based there.”

Some of the money raised by the appeal will go towards an academic department for paediatric respiratory research in Newcastle.

Dr Spencer enthused about the potential impact of a centre for research into conditions which are, at present, relatively mysterious, such as cystic fibrosis.

“Good quality care is best delivered between the NHS in collaboration with the university,” he said. “That way children are getting treatment at the limit of knowledge.”

Women’s marathon world record holder Paula Radcliffe has thrown her weight behind the appeal.

She said: “When I started training more seriously at the age of 14, I was diagnosed with exercise-induced asthma, which gave me a tight chest, made me short of breath and actually made me black out a couple of times. It was scary and worrying and threatened to stop me from doing a sport that I loved.

“So I understand at first hand just how important the lungs are, and I know just how frightening it can be when they're not working properly, especially for young people and their parents.

“It's an area that would benefit enormously from more research and I give the Puffin Appeal my full backing.”

In addition to the research centre, money raised will go towards modern treatment rooms and a general effort to raise the quality of care. Newcastle is a major heart and lung transplant centre but, the experts insist, it is only through providing comprehensive facilities that more children will survive respiratory conditions with healthy lungs.

So we are enlisting your help and, in reaching the target of £2m, the appeal can make a huge difference to the lives of countless children.

To donate to the Puffin Appeal visit www.puffinappeal.com or write to The Puffin Appeal, No. 7 Beaufront Castle, Hexham, Northumberland, NE46 4LT.

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

Demi and Raegen Froggatt with mum Margy Storey

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."

 

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