Thanks for giving us hope
IT is a cruel and frightening illness which kills three youngsters every week in Britain. As organisers of the Ipswich and Suffolk Press Ball announce the Cystic Fibrosis Trust as one of the event's chosen charities, JAMES MARSTON meets a young girl who deserves the chance to hope for a future.
IT is a cruel and frightening illness which kills three youngsters every week in Britain.
As organisers of the Ipswich and Suffolk Press Ball announce the Cystic Fibrosis Trust as one of the event's chosen charities, JAMES MARSTON meets a young girl who deserves the chance to hope for a future.
AS she poses for photographs Aisling McGuire is laughing and joking and larking about.
She's clearly enjoying the experience and doesn't seem to mind the lens being pointed in her direction at all. She jumps on the sofa to get closer to mum and sits patiently while the photographer clicks away. It's a happy moment and like any other nine year old girl Aisling is itching to get away and play the minute it's over.
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But today is a good day and today Aisling is feeling well enough to run about, jump around and giggle.
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For Aisling suffers from Cystic Fibrosis, the UK's most common life-threatening inherited disease.
The youngster has to take 40 pills a day, she has to have physiotherapy twice a day, every day and, until just recently, spend a fortnight in hospital two to three times a year.
A debilitating illness, Cystic Fibrosis affects more than 8,000 people in the UK - Aisling's story is one of many.
Mum Catherine, 42, ushers her energetic daughter out of the room.
She said: “Aisling is the most passionate off our children. She's feisty and really affectionate and loving but she has her tantrums too.
“She can be stubborn but she's very strong. She copes incredibly with what has happened to her.”
When she was born Aisling had no external signs of the disease.
Catherine said: “There was no CF in our family. We have an elder daughter who has no problems. When Aisling was born they did a routine heel prick test and at the time they just happened to be piloting a new screening for CF.
“There was no indication that anything was wrong.”
When Aisling was about four weeks old Catherine got the devastating news her daughter had cystic fibrosis.
She said: “We were at home getting ready to go out. I looked out the window and saw our GP coming up the path. I remember thinking it was odd. He came in and sat us down and told us that Aisling had CF.
“It was a total and utter shock.”
With a background in bio-chemistry Catherine immediately looked up the condition in an old text book.
She said: “It said sufferers have a life expectancy of 10 to 12 years. It was very hard to take in. She was my perfect baby and I was being told she wasn't perfect.
“It was horrible. I can remember finding it very hard to believe because there didn't seem to be anything wrong with her.”
A few days later Aisling was taken to hospital for further tests.
Catherine said: “It's all a bit of a blur but I remember we thought they had made a mistake. I remember waking up one morning and wanting to run away it was so hard to take in that it was happening.
“I cried every day for the first six months after she was diagnosed. You think you won't be strong enough to deal with it but you do, you have to.”
A genetic hereditary disease, Catherine has become somewhat of an expert.
She said: “The condition affects the secretion in the cells of the body, most particularly the lungs. Mucus in the lungs is much thicker and stickier.
“The mucus just sits in the lungs and any bacteria that gets in there has a warm place to grow. Aisling is far more prone to chest infections and lung disease.”
The disease also affects the pancreas which in turn fails to supply the body with enough enzymes for the digestive system.
Catherine said her daughter takes a cocktail of drugs, including enzymes and anti-biotics to maintain her health.
She said: “She has not had a day without drugs since she was four weeks old. She takes about 40 a day now and that's when she's well. It's more when she's not well.”
Aisling's drugs are so much part and parcel of her routine they are kept on the kitchen table.
Catherine said: “She cannot eat without taking enzymes. She takes seven enzyme pills with each meal, three with a snack and two with a glass of milk.
She takes vitamin supplements A, D and E and two lots of anti-biotics six times a day to maintain healthy lungs. It's just part of her life.”
Catherine also has to perform unpleasant physiotherapy on Aisling for fifteen minutes twice a day - even more when she's unwell.
Catherine said: “It's called “postural drainage”. I have to turn her upside down and pat her chest with a cupped hand. It has to be quite hard. It's not so bad now but it was awful when she was younger. She used to run away from me and scream and tell me she hated me and that I was hurting her.
“She understands she has to have it done but she's not keen on it.”
But that's not all.
Catherine said: “Aisling also has to take her nebulised drugs and they are probably the ones she hates the most. She has to sit with a mask over her face connected to a nebuliser while she inhales her antibiotics. It takes about 10 minutes and she takes them two or three times a day.”
ON top of her daily medication Aisling is no stranger to hospital. She has regular hospital appointments every two to three months where she has blood tests, lung function tests, cough swabs and a liver ultrasound as well as prolonged stays when her health deteriorates.
Catherine added: “She had to go to Addenbrookes last year for a bronchoscopy, where they put a camera down into your lungs to see what's down there and wash it out under general anaesthetic.”
As Aisling begins to understand her condition she is also beginning to understand that her life expectancy is reduced.
Catherine said: “In some ways this is the hardest part of the disease. There are times she gets very low and she gets angry and asks why me.”
Catherine said the Cystic Fibrosis Trust have been extremely supportive to families and parents.
She said: “Their website offers a lot of advice and they fund research. That textbook I first looked at was published in 1987. Today the life expectancy is 31 so it is rising. The CF trust is doing a lot of gene therapy work which is an attempt to control the disease. It would be a huge breakthrough. There's never enough money and it is fantastic the Press Ball have chosen to support the CF trust.
“It gives me hope. I want to thank the organisers and the guests for not just giving the CF community hope but also for my family and my daughter reason to hope she has a long life ahead of her.”
Has your family been affected by Cystic Fibrosis? Write to Your Letters, Evening Star, 30 Lower Brook Street, Ipswich, IP4 1AN or send an e-mail to email@example.com
SINCE the inaugural ball back in 1997 the Ipswich and Suffolk Press Ball has raised thousands for charity.
Organisers have pledged to raise a whopping £20,000 at this year's glittering event and have chosen the Cystic Fibrosis Trust and Disability Care Enterprise as beneficiaries.
Evening Star editor Nigel Pickover said: “Aisling's story and many others like her show us in the starkest terms why the money we raise at the Press Ball can go to help those with this awful disease.
“Cystic Fibrosis is a disease that affects our community and our children. We are delighted to announce the Cystic Fibrosis Trust as our chosen charity.”
Regularly supported by the business community the Press Ball is once again sponsored by Ipswich firm Call Connection.
Graeme Kalbraier, managing director of Call Connection, said: “I am delighted the Call Connection is to sponsor the 2008 Press Ball and I am delighted the Cystic Fibrosis Trust will benefit from the event.
“This is a fantastic charity doing a fantastic job which deserves and needs our support.”
With entertainment provided by legendary Eurovision pop group the Orginal Bucks Fizz as well as X-Factor crooner Adam Chandler, the press ball is a dazzling evening and a stalwart of the Suffolk social calendar.
Music, dancing, fine food and wines are followed by an auction and tombola with prizes donated by a number of businesses and organisations.
Sandra Howarth, spokeswoman for the Cystic Fibrosis Trust, said: "We are excited and delighted that the Ipswich Evening Star and Call Connection have chosen the Cystic Fibrosis Trust to benefit from the Press Ball, their enthusiasm, commitment and support will make a real difference to those people and their families living with cystic fibrosis in Ipswich as well as the rest of the UK. Without such commitment we could not be able to achieve the goals we have set ourselves - thank you."
The ball is to be held at the Hotel Elizabeth, Copdock, on Friday June 20. To buy tickets call Bridget York on 020 8429 7530. If you would like to make a donation they can send a cheque to: The CF Trust
PO Box 603, Cambridge,CB24 9WS
More than two million people in the UK carry the faulty gene that causes Cystic Fibrosis - around 1 in 25 of the population.
If two carriers have a child, the baby has a 1 in 4 chance of having Cystic Fibrosis.
Cystic Fibrosis affects the internal organs, especially the lungs and digestive system, by clogging them with thick sticky mucus. This makes it hard to breathe and digest food.
Each week, five babies are born with Cystic Fibrosis.
Average life expectancy is around 31 years, although improvements in treatments mean a baby born today could expect to live for longer.
It is common for people with CF to encounter some difficulties with their lungs. A combination of physiotherapy and medication can help control lung infections and prevent lung damage. To avoid the risk of cross-infection, it is recommended that people with CF do not come into close contact with others with Cystic Fibrosis.
Cystic Fibrosis affects the pancreas, which makes it difficult for people with CF to digest food. This can cause malnutrition, which can lead to poor growth, physical weakness and delayed puberty. There is medication that can compensate for the failure of the pancreas.
In older patients, insulin production can become deficient due to increasing pancreatic disease. Some develop CF related diabetes mellitus and their blood sugar levels are no longer controlled. This rarely happens to children with Cystic Fibrosis.
Common symptoms of diabetes include thirst, hunger, weight loss and excessive need to urinate, but some people do not show obvious symptoms of diabetes.
Since the founding of the CF Trust in 1964, we have been working to improve the lives of people with CF, raise the profile of CF and fund research into a cure.
The trust's objectives are to:
Fund medical and scientific research to develop a cure and provide effective treatments for Cystic Fibrosis.
Ensure appropriate clinical care for those with Cystic Fibrosis.
Provide information, advice, support and, where appropriate, financial assistance to anyone affected by Cystic Fibrosis.
The Cystic Fibrosis Trust is the UK's only national charity dedicated to all aspects of Cystic Fibrosis.
The CF Trust invests in medical research to treat the symptoms of CF and to find an effective treatment by correcting the basic genetic defect. The CF Trust also provides information, advice and support to families affected by Cystic Fibrosis and aims to ensure that people with CF receive appropriate healthcare.
All clinical and research projects are scrutinised by an international panel of leading doctors and scientists. This ensures the CF Trust invests in research that will have imminent and/or important clinical benefit to those with Cystic Fibrosis.
Research funded addresses the serious symptoms and complications of the disease, which include infection, inflammation, malnutrition, liver failure and osteoporosis. The CF Trust invests around £4 million each year in research. Gene therapy
Since the identification of the gene that causes CF in 1989, much time and money has been invested to discover a way to correct the basic genetic defect or add a healthy copy of the faulty gene.
In the last fifteen years, the Trust has helped to set up and staff 41 special CF centres throughout the UK. The CF Trust also runs a peer review service for CF clinics and provides funding to train the top CF doctors of the future through consultant training at specialist CF centres.
The CF Trust provides confidential helplines for general enquiries about CF, benefits advice and welfare grants.
Expert Patient Advisers
The Expert Patient Advisers are experts in the care that people with CF should expect and use their knowledge to influence anyone who is involved with the commissioning or provision of care and services for people with Cystic Fibrosis.