Bringing up boys with a life-limiting condition

As any parent with young children could tell you, the days may be long but the years are short and can seem to fly by.

Time is a fickle thing and for mother-of-two Sophie Davison it is something to both cherish and fear.

Since finding out that her boys - James, aged four, and George, aged two - have a life-limiting illness, Sophie says she tries to make the most of every hour of each day that she gets to spend with them.

Her sons have an inherited condition called cystic fibrosis that cuts short their life expectancy.

Sophie recalls: "It came as a massive shock when we first found out.

"James was just two years old and was in hospital for pneumonia. And I was heavily pregnant at the time with George."

It was days later when George was born that doctors realised what the problem was.

We try not to think about the bad side ”

Baby George had a routine heel prick test that is given to all new babies to check for a range of health conditions that can be detected from a small sample of blood.

His test revealed that he had a serious, incurable inherited disease.

James' doctors then decided to test him for the same condition and discovered that he also had it.

Sophie said: "It was a complete bombshell. My husband and I didn't know we were carriers of this condition.

"No-one in our family had it so it was a massive shock.

"Within 24 hours our whole world had changed."

Faced with the demands of caring for a new baby, Sophie also had to learn how to be a carer for both of her boys.

"We met with the cystic fibrosis team at the hospital and they taught us all about it. It was a lot to get our heads around."

Because of the nature of the disease, which causes thick, sticky secretions to form that can clog some of the internal organs, both boys would need around 40 tablets a day to help their digestion and at least two sessions of physiotherapy every day for the rest of their lives to clear their lungs.

Sophie said: "It was pretty difficult to start with. James was just two years old and suddenly had a new baby brother to get used to as well as all of this.

"He had to take lots of medicine all the time and I had to do percussion treatment on him which involves about 20 minutes of patting to keep the lungs clear.

"It's really difficult to get a two-year-old to sit still through that."

With time the family developed a routine and both boys cope well with their therapy.

"James started school in September and he's doing really well. I was a bit worried about it at first. I worried about how the teachers might cope with his condition. But they've been fantastic and it's gone really smoothly.

"They understand his treatment and have let him have the high fat diet that he needs in his lunch box even though they obviously normally want to discourage this type of food."

Looking to the future, Sophie is optimistic, even though her boys' condition is life-limiting.

"We try not to think about the bad side.

"Since the boys were diagnosed the average life expectancy with cystic fibrosis has gone up already and the average age is now 38. And there are always new treatments on the horizon.

"We enjoy every day as it comes, and focus on making sure the boys have a really amazing life."

She says the boys are also a great comfort to one another.

"Of course they fight now and again. They are brothers. But as they get older they can support each other and know that they are not alone."

In the UK five babies are born with cystic fibrosis every week.

Over two million people in the UK carry the faulty gene that causes the condition - around one in 25 of the population.

If two carriers have a child, the baby has a one in four chance of having CF.

Cystic Fibrosis Week runs from 8-14 May 2011.