Our  Story

We started raising money for the Cystic Fibrosis Trust by holding a masquerade ball in 2013. Since then it's been an annual event and the support we have received has been invaluable. Cystic Fibrosis (CF) has been a huge part of our lives for twenty five years, in those years we have seen some immense changes in the care and treatments available to CF sufferers. Without the input from The Cystic Fibrosis Trust to research and clinical trials my daughters wouldn't have had the happy lives they have. They will now introduce themselves and explain a bit about what effects CF has had on them and their thoughts on the future. 

'Hi I'm Marisa, twenty five years old, an age my parents weren't even sure I'd ever reach. When I was diagnosed at one year old they had never heard of Cystic Fibrosis and were sent to *research it* which didn't lead to great news for them. Luckily the treatment for me has developed over the years and now life expectancy has grown to near forty for children born with Cystic Fibrosis today. Against the odds more and more CF sufferers are living in to adult hood and like myself even managing to have their own families. I have a gorgeous almost three year old. Lately my health has started declining more rapidly, I struggle to keep up that little bit more, I cough a lot more and my lungs get damaged more with every cold and every infection. My lung function took a massive hit in 2015 where I spent five weeks in hospital and I've always struggled that bit more since then. I have around three courses of oral antibiotics and four courses of IV antibiotics a year, sometimes this means hospitilisation or sometimes we manage at home with the support of my husband and mother. I also suffer with Cystic Fibrosis related diabetes which means I am insulin dependent and have to manage this. I feel I'm at a stage in my life where I'm really relying on something NEW to save me. There is so much on the horizon for the Cystic Fibrosis community, things that could help me, please join us in raising money and awareness of The Cystic Fibrosis Trust so they can develop these before it's too late for me'. You can follow my Facebook awareness page  

 'Hi my name is Ali i am 14 years old,  I was diagnosed with cystic Fibrosis from birth. When I was born I was rushed to Kings College Hospital to under go an operation as I had a blockage called Meconium ileus, since this i have suffered with my stomach. I have been lucky with the health of my lungs so far but have developed a fatty Liver and an enlarged spleen, having an enlarged spleen has been hard as I love sport and now there are a lot of sports I cant do in case I get knocked and get a bleed. I am also diabetic but have managed to come off of insulin which they believe is due to all the dancing I do. Last year my Lung function started to go down and I've had a bit more trouble controlling my sugars so i hope some new medicine is available soon to help correct some of these problems so please help us to raise some important funds'. I would also like to mention how the Dance school i attend Showcase Performance company put on a large production at the White Rock Theater Hastings in 2016 and raised a lot of money for the Cystic Fibrosis Trust If you would like to find out more about Showcase Please Click button below to look at there Facebook page. 

 

 

 

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