Sam Roonan can often be found with a big beaming smile on his face. This bright and chatty 12-year-old certainly has plenty of interests to keep him occupied.
Just like other boys his age, he loves to play cricket, football and tennis. But unlike his friends, Sam has something extra to contend with – he desperately needs a new pair of lungs.
Sam has cystic fibrosis, a life-threatening inherited disease which has slowly damaged his lungs through infection and inflammation.
Having CF means Sam can’t run around. But that’s not stopped him from adapting his favourite games, determined to make sure that the fact he struggles to breathe doesn’t hold him back.
Day-to-day life for Sam and his family, from Havant, is a challenge.
The Warblington School pupil has to take more than 50 tablets a day, including enzyme tablets with everything he eats. He also has many nebulisers, antibiotics and various other medications.
Sam relies on oxygen during the night and when he is out and about during the day. He also has courses of intravenous drugs and must spend a lot of time in hospital when he picks up colds and infections – sometimes up to six weeks at a time.
‘It’s hard for me to breathe and I can’t do as much as I used to be able to, but I’m trying to make the most of life even though it’s always hard to keep up,’ explains Sam.
‘I’m just waiting for my transplant and I don’t know if it’s ever going to come. I wish it would come soon, it would make such a big difference to my life.’
Living with CF is something Sam, mum Lisa, dad Mark and sister Josie, have all had to come to terms with.
And that’s the theme of this year’s CF awareness week, which runs until Saturday.
Sam is helping to front the national campaign and aims to highlight what having CF means to him. He’s filmed his own video, talking about what it’s like having to take so much medication and what he hopes the transplant will achieve.
‘They came and visited me and they wanted a few shots of things,’ says Sam. ‘I wanted to do it to make people more aware of it. Many friends haven’t heard of it.’
Sam’s been on the transplant list for almost four years. Having one would make a massive difference to his life, but all the family can do is wait and hope.
‘Sam has had a difficult time,’ adds Lisa.
‘He’s been in and out of hospital and had to have a lot of intensive treatment, but despite everything he’s always kept smiling and is really determined.
‘It’s his fighting spirit that’s got him this far in life and he tries his best to enjoy every day.’
In 2009, Sam won the Fighting Spirit award at the Cystic Fibrosis Trust’s Breathing Life ceremony.
Proud Lisa says: ‘His hill has been a lot bigger than others have had to climb. In some ways, children who’ve had a lot to deal with in life do become increasingly determined.’
Cystic fibrosis is one of the UK’s most common, life-threatening inherited diseases.
It causes the internal organs to become clogged with sticky mucus, which attracts infection and makes it difficult to breathe and digest food.
People with cystic fibrosis have to undergo a tough daily treatment regime including taking dozens of pills, inhaled and intravenous drugs, plus physiotherapy.
During Cystic Fibrosis Week, it is likely five babies will be born with CF and two lives will be claimed by the illness. Only half of those living with cystic fibrosis are likely to live past their late 30s. There is no cure.
Money raised during Cystic Fibrosis Week will help the Cystic Fibrosis Trust continue to fund medical research to fight the symptoms of, and treat the cause of, cystic fibrosis so that children like Sam, James and George can look forward to a brighter future. It will help the Cystic Fibrosis Trust improve the care of people with CF, and will also help provide direct support for people with CF and their families.
‘WE DO AS MUCH AS WE CAN TO MAKE THEIR LIVES FUN...’
Life for Sophie and Iain Davison changed forever within the space of just a few hours.
They’d already been trying to juggle the arrival of new baby George with their other son, James, being in hospital when things took a dramatic turn for the worse.
Tests revealed George had cystic fibrosis and it wasn’t long before doctors put two and two together to work out that James’ ill health was caused by the same disease.
‘Within 24 hours our whole world had changed,’ remembers Sophie. ‘James had been an ill baby, very wheezy and had struggled to put weight on. I’d been to the doctors a few times and then he caught pneumonia. A day later we were told about George’s results and then both our children were diagnosed with cystic fibrosis.
‘It was such a shock, we didn’t really know what it was or what it meant and it was such a difficult time whilst we tried to accept the diagnosis.’
The couple, from Sarisbury Green, have had to adapt quickly. James, now four, and two-year-old George, both take more than 40 pills a day and need physiotherapy every morning and night.
While George is still too young to understand what’s happening, James has started to ask questions. Sophie says she answers as honestly as she can and a video produced by the Cystic Fibrosis Trust is helping James understand.
‘We try not to think about the bad stuff,’ she adds. ‘We try and do as much as we can to make their life fun.’
When Sophie saw that the CF Trust was looking for families to help promote the awareness week she agreed to help out.
A film crew followed the family around and interviewed her about what it’s like when both your children have an incurable illness.
In time, the family hopes new research will help sufferers experience a better quality of life.
‘They need a massive amount of money to help not only our boys but all the other children,’ adds Sophie.
On Saturday the Davison family will host a toy sale at Sarisbury Green Parish Rooms, in Barnes Lane, between 2.30pm and 4.30pm, in aid of Cystic Fibrosis Week.
They’re hoping to raise lots of money and are still looking for toys to be donated.
If you have any good quality toys to donate, you can drop them off at the Parish Rooms on the day, or call Sophie on 07788 107028 to arrange a pick-up.