Fighting to keep cruel disease at bay
A year ago Aisling MacGuire first featured in the Evening Star and soon after the ten-year-old was a special guest at the Ipswich and Suffolk Press Ball.
A year ago Aisling MacGuire first featured in the Evening Star and soon after the ten-year-old was a special guest at the Ipswich and Suffolk Press Ball. Today JAMES MARSTON reports on some of the highs and lows experienced by Aisling and her family in the last 12 months.
THERE'S always a lot of laughter at the MacGuire family home in Stonham Aspal.
And on a bright spring day the garden beckons.
As the Evening Star photo shoot gets under way Aisling, her sisters Jessica, six, and Eleanor, 12, are keen to pose for the camera.
Mum Catherine might be a bit more reluctant to take the limelight but she knows that exposure in the press helps Aisling and other youngsters like her.
Because Aisling sufferers from cystic fibrosis - a cruel disease that can leave sufferers fine one day and fighting for their life the next.
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Britain's most common life-threatening inherited disease, cystic fibrosis affects more than 8,000 people in the UK.
And CF is a killer.
Cystic fibrosis affects the internal organs, especially the lungs and digestive system, by clogging them with thick, sticky mucus, making it hard to breathe and digest food.
Average life expectancy is about 31 years - and though this is rising and research is making inroads into developing gene therapy to manage the condition - there is no cure.
This year organisers are hoping guests at the Ipswich and Suffolk Press Ball will dig deep in aid of the event's chosen charity.
Catherine said: “Aisling was diagnosed with CF when she was four weeks old. She was pretty well for the first 18 months then had a period of bad health where she was in hospital for most of the time.
“Then we had a run of about five years when she was really well but since the age of about six she has had two or three admissions to hospital every year.”
No stranger to hospital, Aisling was again very poorly just before last year's Press Ball - though on the night she was well enough to attend the event.
Catherine said: “Aisling was ill again in November last year and went into hospital again.”
Aisling said: “Hospital is very boring, I don't really feel unwell but I don't like having the line fitted that goes into my arm.”
A pupil at Stonham Aspal Primary School, Aisling is like any other young girl of her age. She's soon taking her SATs, she enjoys being out and about, she plays badminton, she plays with her sisters, she's busy living life.
But CF is an unpredictable disease, she has to be very careful to avoid cross infection, each day she takes a large cocktail of drugs to help her digest food and keep her immune system healthy, she also has daily physiotherapy performed by mum which can at times be painful and unpleasant.
Catherine said: “Generally Aisling has been pretty healthy but she is getting to an age where she is beginning to understand the full implications of the disease and that has been very difficult for all of us to deal with.
“She gets angry and scared. The psychological affects of CF are hard to come to terms with. No two children are the same and it is such a varied disease, people's experiences are very different so finding support to help with the psychological effects are difficult.”
Gene therapy is offering a ray of hope in living with a condition that must have some terrifying lows.
Catherine said: “It is very exciting. I know the research is in the first stage of clinical trials and the next step is to treat a sample population with the new techniques. We were very pleased to hear that news.”
Last year might have had some bad times but Aisling and her family also had lots of fun.
Catherine said: “We went to Florida on a holiday through the Rays of Sunshine charity. We swam with dolphins and went to Disney World. We had a fabulous time.”
The family also enjoyed a holiday in Cornwall and time in their large Suffolk garden.
For Catherine and her family the money raised at the Press Ball has the potential to make a huge difference to Aisling's life.
She said: “The Press Ball is a fantastic event, it raises much-needed cash to help those with CF and their families. It also raises awareness so people know what CF is and what it means.”
Further information can be found about Cystic Fibrosis on the website www.cftrust.org.uk. Help and advice for those affected by Cystic Fibrosis is available through the Cystic Fibrosis Helpline on 0845 859 1000.
Have you been helped by the Cystic Fibrosis Trust? Are you a regular guest at the Ipswich and Suffolk Press Ball? What do you think? Write to Your Letters Evening Star 30 Lower Brook Street Ipswich IP4 1AN or send an e mail to firstname.lastname@example.org
More than two million people in the UK carry the faulty gene that causes cystic fibrosis - around 1 in 25 of the population.
The Cystic Fibrosis Trust is the UK's only national charity dealing with all aspects of cystic fibrosis. It funds research to treat and cure CF and aims to ensure appropriate clinical care and support for people with cystic fibrosis.
The Cystic Fibrosis Trust was founded in 1964.
The trust's objectives are:
- To fund medical and scientific research to develop a cure and provide effective treatments for cystic fibrosis
- To ensure appropriate clinical care for those with cystic fibrosis
- To provide information, advice, support and, where appropriate, financial assistance to anyone affected by cystic fibrosis.
Since the inaugural ball in 1997 the Press Ball has raised thousands for charity and this year the Press Ball organising committee has chosen the Cystic Fibrosis Trust as the 2009 beneficiaries.
The event will be held at the Hotel Elizabeth Copdock on Friday, June 19 with music, dancing, fine food and wines followed by an auction and tombola with prizes donated by businesses and organisations.
As announced in The Evening Star, headline acts will include rock legend and soul sensation Ray Lewis of The Drifters fame who will perform at the Soul Ball themed night of nights.
Regularly and strongly supported by the county's business community the Press Ball is once again sponsored by Ipswich firm Call Connection.
Press Ball bosses are today offering the chance for the business community to offer their help to raise cash for the event's chosen charities
If your business or organisation would like to donate a raffle or auction prize to the event please contact Bridget York on 07961 430599