Children bounce for life; In Cystic Fibrosis Awareness Week,Anya Burgess speaks to two parents who live in its shadow.
WHEN her two-year old daughter began to suffer with a constant chest infection, Jayne Walsh made frequent trips to her doctor, who initially thought Charlotte might suffer from childhood asthma.
But after tests at Alder Hey Children's Hospital, two doctors greeted Jayne with the news that Charlotte was suffering from cystic fibrosis.
The family's worldcollapsed. ``We were devastated,'' says Jayne,from Crosby. ``Charlotte was our first baby and we noticed she had some trouble going to the toilet but we didn't know it wasn't normal and the doctors had never mentioned it. When the doctors spoke to us, they told us everything within one day including her life expectancy and initially it was very hard.''
Cystic fibrosis is a genetic disorder which affects the lungs and digestive system. Sufferers produce a sticky mucus in the lungs, which attracts infections. This results in irreparable damage to the organ and their only chance of survival is a heart and lung transplant.
Charlotte, who is now five, is one of 300 children and young people in the North West who live with the disease.
Every day she has a daily regime of drugs, supplements and exercise to keep the condition under control.
Jayne, 31, a part- time legal executive, says:``She has physio before she goes to school and before she goes to bed. If she gets ill we have to do a third lot in the middle of the day.
``She grew a bug that embedded itself into her lungs and was in hospital for two weeks while they treated her and she was on a nebuliser for ages.
``Her height and weight at the moment are very good but I still have to give her antibiotics twice a day,multi-vitamins and vitamin E daily as well as enzymes every time she eats to help her digest her food.
``We'vebought her a trampoline which is great at shifting the mucus, the more children with cystic fibrosis jump around the better.
``We attend clinic in Alder Hey every nine weeks at the moment but if she gets ill we go more often and the cystic fibrosis nurse is only a phone call away if anything happens.''
Jayne,and husband Peter, a site manager,have since had a second child. Mia,aged three, who has undergone tests for the disease but has been given the all-clear.
Jenny Cottrell is a cystic fibrosis nurse specialist and part of a dedicated team of people at Alder Hey Children's Hospital who are on call day and night to offer advice and help to families.
She says: ``Children with cystic fibrosis have to go through a horrendous regime of medication as well as chest physiotherapy.
``The most important part of easing the condition is early diagnosis to limit the damage done to the lungs,followed by good treatment to keep the children healthy and free from infection.''
One in 25 people in the UK carry the disease and when both parents are carriers there is a one in four chance with every pregnancy that their child will have cystic fibrosis.
Forty-year oldKim Apter,from Melling,found out when she was six months pregnant with her son James that he had the disease.
She says: ``I went for a scan andJames's bowel was bright so they knew something was wrong. They either thought he was a Downs Syndrome baby or he had cystic fibrosis.
``We had no history of cystic fibrosis in the family but we had all the tests and it turned out we were carriers.
``We had such mixed feelings at first, wedidn't know where it had come from and we were so frightened. When James was born he had a bowel blockage so had to be operated on at Alder Hey when he was just two days old. He was in hospital for 10 weeks.
``We had spoken to the cystic fibrosis team at Alder Hey Hospital about what was going to happen but we were in total shock.''
James, who is now two, is currently well but Kim has left her job as an auxiliary nurse to care for him. Her other sons Michael and Phillip,13 and15,are not sufferers.
Kim, who is married to James, a petrol station manager, says: ``Alder Hey have been a godsend and our neighbours have been brilliant. We are helping to raise money for the 40thanniversary of the Cystic Fibrosis Trust.
``Our lives have totally changed but James is a brilliant little boy and this is routine for us now but all we can hope for is a cure.''
Kim Apter,from Melling, with two-year-old son James Picture: FRANK LOUGHLIN; Jayne Walsh with daughter Charlotte; Picture: JASON ROBERTS
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|Publication:||Daily Post (Liverpool, England)|
|Date:||Mar 24, 2004|
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