Bringing up boys with a life-limiting condition
Published: 7th May 2011 00:01:06
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.
At 03:16:30 in HeadlinesUkraine says it will launch an investigation into a fatal shooting in the east of the country which has raised tension with Russia further.
At 02:46:49 in HeadlinesFresh violence has erupted in the Venezuelan capital, Caracas, between police and opponents of President Nicolas Maduro.
At 02:43:14 in EnglandA "very English and very eccentric" tradition that dates back centuries is expected to attract thousands of people on Easter Monday.
At 02:41:42 in HeadlinesOnline social media is being misused to insult, intimidate and smear staff in schools, the conference of the NASUWT teachers' union will hear.
At 02:33:53 in BusinessJapan's trade deficit quadrupled in March as export growth slowed and energy imports continued to rise.
At 02:26:33 in HeadlinesTeachers are to debate calls for a boycott of tests for four-year-old pupils, set to be introduced in England's primary schools in 2016.
At 01:21:56 in EnglandFlood protection has been restored to more than 100,000 properties in England left at risk after the wettest winter on record.
At 01:21:22 in EnglandAs part of a BBC Radio 3 series marking the 450th anniversary of Shakespeare's birth five essayists are shedding light on the history and culture of the Midlands. In the first essay, novelist and journalist Geoff Dyer tries to work out what is the true home of the Midlander.
At 01:03:38 in HealthThe incidence of the most serious skin cancer in Great Britain is now five times higher than it was in the 1970s, figures show.
At 00:57:50 in HeadlinesAs you enjoy another bank holiday, are you thinking "why don't we have more of them", asks Anthony Reuben.
Harvard CitationBBC News, 2011. Bringing up boys with a life-limiting condition [Online] (Updated 7th May 2011)
Available at: http://www.ukwirednews.com/news/151674/Bringing-up-boys-with-a-life-limiting-condition [Accessed 21st Apr 2014]
News In Other Categories
Scotland's first chocolate factory aroused suspicion at the outbreak of World War One. Why was it so strongly-built and why did it employ so many Germans? The authorities were called to investigate.
After Joseph Heller published his seminal war novel Catch-22 he adapted the book for the stage. He hoped it would go to Broadway - but more than 40 years on, his script has very rarely been performed. Now it is finally getting its UK premiere.
Luke Donald finished second at the RBC Heritage as Matt Kuchar's final-round 64 earned victory in South Carolina.
With the doors to its brand new £1million training centre officially open, one of the UK's leading apprentice training providers, Bristol based S&B Automotive Academy, is showcasing its world-class facilities by launching a series of foreign student exchanges for the first time in its 41-year history. To get a flavour of what life is like as an apprentice in the UK, the Academy hosted 16 apprentice engineers and bus drivers from the G9 Automotive College in Hamburg, Germany, as part of a Europe-wide vocational training initiative called the ‘Leonardo Programme’ with support from the European Social Fund. In a reciprocal arrangement, S&B will be sending nine apprentices to Germany during February 2012 so that they can get an appreciation of life in the automotive industry on the Continent. A further three German exchange groups are being planned for next year. Designed to assist the development of vocational skills and training across Europe, including work placements for trainees, the Leonardo Programme has a budget of €1.75bn, which is helping to encourage UK organisations to work with their counterparts abroad. In what is expected to be another challenging year for employers in the UK automotive sector, S&B’s Chief Executive, Jon Winter, claims that the exchange initiative will bring many benefits to the Academy and its apprentices: “In a world of global automotive brands, it’s important for our learners to understand the international context of the industry they have chosen to make their career. This new exchange programme will enable apprentices and Academy staff alike to achieve a better understanding of the challenges and opportunities within the automotive arena in Europe. With the Academy’s influence also extending to the USA and Asia, there’s every possibility that this initiative could move further afield in the future.” Continued Winter: “The need for skilled technicians across the world is on the increase and we actively encourage our apprentices to look at broader horizons during their training. Many of them have already learned the phrase ‘Vorsprung durch Gelehrtheit’, quite simply, ‘Advancement through learning.” In the 2010/11 academic year, S&B doubled the number of successful Apprenticeships over the previous year with some 350 apprentices graduating from the Academy. At the same time, achievement levels reached an all-time high with an overall success rate of 85%. For those learners on the Advanced Apprenticeship three-year programme, success rates were even higher, at over 98%. PHOTO CAPTION: As part of their exchange visit, S&B Automotive Academy arranged for the German apprentices to visit Hampshire bus operator, Bluestar, at its Barton Park depot. The students are pictured with S&B’s Andy West (3rd right) and Steve Prewett, Bluestar’s Area Engineering Manager (2nd right). Ends http://www.sandbaa.com
David Cameron could cause "alienation" with his comments about Christianity in the UK, public figures have warned.
Ukraine says it will launch an investigation into a fatal shooting in the east of the country which has raised tension with Russia further.