Massive thanks to each and everyone of you , that has been a part of making Charlotte's quilt , she absolutely loves it !!!! Can't thank you all enough for your hard work , it's truly amazing and will be treasured forever !!! Charlotte , Aileen & John xxx
We first noticed something was wrong when we couldn't quench Charlotte’s hunger. She constantly had chest infections. We kept taking her to hospital knowing something was wrong, but kept being told it was just bronchitis. When she was just 6 weeks old, her breathing became very shallow and she was lifeless. We called an ambulanc , and she got to hospital and they rushed her into resus. We were told if we had left it another week she would have died. She was put on the ward on a CPAP device. She was later diagnosed with Cystic Fibrosis after having the sweat test performed. As time went by she was given more and more medication , which fills up three of our kitchen cupboards. She has been in and out of hospital with chest infections and weight loss. She picked up pseudomas at the age of two, which she is still being treated for now and she has picked up another four since.
As the years went by she lost weight , even though she was having creon and and dietry shakes to try to put weight on. Nothing has worked, so now has her body fat index has gone as low as it can at less than 1%. She is now having to have a gastrostomy in May so we can feed her through the night, if this doesn't work , the hospital doesn't know what to do next! She is such a brave girl and is always laughing, she loves school and wants to be a teacher when she is older. She is an inspiration to us as parents. When we have to tell her she can't do a lot of what her friends are doing , you can see the sadness in her eyes and quite often cries herself to sleep. It's awful as parents to watch this. We try to make her life as normal and pleasant as we can, in between her medication, nebuliser and physio which she has to have every single day, even when we are on holiday.