The Cayman Islands Cystic Fibrosis Trust was officially launched 28 September with a reception at the Governor’s residence.
Hurricane Ivan delayed the official start of the trust, which was founded by Jon and Pamela Fowler, parents of Meaghan, who was diagnosed with the disease when she was born almost two years ago. Emma Dinwiddy is patron of the trust.
‘Our sole purpose is to raise money for research and a cure,’ Mrs. Fowler said.
While Meaghan is one of only two children known to have cystic fibrosis in Cayman, it is the most common, life-threatening inherited disease in the UK, affecting more than 7,500 people, according to the Cystic Fibrosis Trust of the UK.
In the US, about 30,000 people have the disease, according to the Cystic Fibrosis Foundation.
The disease causes the production of thick, sticky mucus which clogs the lungs and can lead to life-threatening lung infections. In addition, these secretions affect the pancreas, preventing the normal breakdown and digestion of food. The mucus can also block the bile duct and damage the liver.
Cystic fibrosis is a genetic disease, passed on when both parents carry a specific recessive gene. When both parents are carriers, each child has a 25 per cent chance of getting the disease, a 50 per cent chance of being a carrier and a 25 per cent chance of being free of both.
Mrs. Fowler explained why she and her husband set up the trust.
‘When I was faced with Meaghan’s diagnosis, I asked myself ‘Why me? And then I realised that I was in the perfect position to raise funds,’ she said.
Mr. Fowler outlined the research being done and the possibilities for a cure.
‘Progress is being made on a weekly basis. Researchers can now isolate and manufacture the corrected gene,’ he said.
Other lines of research have led to a possible treatment, for which trials are planned, dependent on US Food and Drug Administration approval, Mr. Fowler explained.
‘The horizon for trials is measured in years, but hope remains, and as Meaghan’s father that hope is a lifeline to me,’ he said.
Mrs. Dinwiddy’s patronage provided a much-needed boost.
‘When I asked Mrs. Dinwiddy to be patron, I had never met her before. I was thrilled when she said yes and that gave the project wings,’ Mrs. Fowler said.
Mrs. Dinwiddy was happy to help.
‘I though it was so wonderful that she was turning such a devastating experience into something so positive. I wanted to help any way that I could.
‘I’m only sorry that because of Ivan my patronage has been so short-lived,’ Mrs. Dinwiddy said.
Mr. Fowler is hopeful that the trust will be able to contribute much-needed funds to research.
‘A 30 per cent chance of reaching the age of 18 is not the statistic anyone wants for their child. We are determined, with the help of the people of the Cayman Islands, to be part of making that statistic history,’ he said.
As part of its fundraising efforts, the trust will be selling a series of Christmas cards and a calendar featuring Caymanian scenes photographed by Peter Heiss, who donated his work. The cards will be available by mid-October at local venues including the shop at the National Gallery, The Salon and Hobbies and Books.
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