Amazing mums set up charity to help CF kids
PUBLISHED: 12:27 02 May 2008 | UPDATED: 10:37 17 June 2010
THERE ARE more than 8,000 children in the UK with Cystic Fibrosis - with five affected babies born every week. The children cannot come into contact with other sufferers in case of virus cross-contamination and barely live past the age of 30.
THERE ARE more than 8,000 children in the UK with Cystic Fibrosis - with five affected babies born every week.
The children cannot come into contact with other sufferers in case of virus cross-contamination and barely live past the age of 30.
The tools are in place to help the sufferers cope with the condition - and all the strains and problems that come with the genetic disorder.
But, for the hundreds of parents learning to cope with the disability of their loved one, the hours of physical strain and the years of psychological exhaustion, the help does not exist, either from the NHS or the one available charity, the Cystic Fibrosis Trust.
Four women have taken the amazing steps towards helping these mothers and fathers - giving the tools to provide their children with a better quality of life and the parents ease of mind.
Exmouth women Sue Stoneman, Denise Murphy, Gaynor Daniels and Sam Cann set up the East Devon Cystic Fibrosis Quality of Life Fund - which has just celebrated its first year as a charity - in answer to the calls for help.
Sue, of Ivydale, Brixington, told the Herald of her struggles after her 10-year-old son, Ashley, was diagnosed with the life-threatening illness.
Cystic Fibrosis is a common inherited condition whereby the internal bodily secretions become thick and sticky, hindering the function of certain organs, such as the lungs and digestive system.
She said - proudly wearing her charity's T-shirt - how "the burden is never-ending; we have to live with it every day".
Just four days after Ashley was born, the nurses had to "flush out" his insides.
Many operations and tests followed after he was rushed to Bristol Children's Hospital because of a blockage to his stomach - and the Stoneman family was told of his condition.
The NHS provided the family with the advice and information required; the physiotherapy sessions he would have to do every day, the 40 pills he would have to take with his food, the multitudes of infections he could catch.
A torrent of information and leaflets, but without the actual support network so desperately needed, says Sue.
Ashley jumps on a trampoline in the background as Sue talks of her adoration and admiration for her son.
She said: "He is very tolerant with it [CF]. Where he had his kidney stones out, he has a scar. He says, when he is older, he will wear a shark's tooth around his neck and say he got the scar when swimming with sharks - so he can impress all the girls.
"He is so sensible for a 10-year-old and can really look after himself."
The mother of two described her dream for the future of her charity: "One day we will set up a chat room, like MSN, something where we can link all the CF children through the internet, so they can talk and help each other - since they can't meet, they can at least talk."
It is this local support, just knowing that there are other people out there with the same condition, that inspired the movement; a sad truth is that non-affected children do not understand Cystic Fibrosis and, like all school children, assume it's something that you can catch.
It's a struggle Ashley deals with every day at Brixington Junior School. "I sit mainly on my own at lunch, everyone just runs away frightened," he said. "I haven't let it affect me too much, but I don't have many friends."
Ashley starts his day with a nebuliser, which facilitates the inhalation of his medication straight to the lungs.
The nebuliser, issued by the NHS, is heavy and dreadfully noisy and must be taken three times a day for 30 minutes, a great ordeal for a 10-year-old who must stay still during the period.
The CF Quality of Life Fund is trying to provide all sufferers with the new model of the nebuliser, a silent and quicker version.
The charity gives half of its fundraised money to the CF Trust, totalling nearly £8,000 so far, and has given £6,000 in grants to local people.
The next fundraising event will be a South West Coastal Path Walk on a colossal level, with 79 different routes being walked by volunteers, families and friends.
The stamina is constant for this small group of women - who wanted a better life for their children - and local support has been strong.
If you would like to help the CF Fund, contact Sue Stoneman through www.cfqualitylifefund.btik.com
By By Dina Karim