Thanks for taking the time to visit Freddie's JustGiving page.
As you are all aware by now, as a baptism gift the family would really like to make a dontaion to the CF trust to aid further gene therapy trials, some of which are well under way at the moment. There is currently no cure for Cystic Fibrosis, but hope, preventative and palliative treatments can at least make life more bearable for those suffering from the disorder.
The Cystic Fibrosis Trust were a great source of support for us a family in the early days of Freddie's diagnosis, providing us with vital information on the condition and how it may affect all of our lives, the treatments available and in general how to cope with the life shattering realisation of having a child with a permanent, life threatening condition.
Cystic Fibrosis affects the internal organs, especially the lungs and digestive system, by clogging them with thick sticky mucus. This makes it hard to breathe and digest food. At times, feeding and gaining weight have been a huge problem (and battle) for Freddie. We have spent several occasions in hospital with brochilitis and many a sleepless night!
It is astounding that each week, five babies are born with Cystic Fibrosis and each week, three young lives are lost to Cystic Fibrosis. Over half of the CF population can expect to live to 38, however life expectancy can be much lower than this. With improvements in treatments and sucess in gene therapy trials, hopefully this will increase over time.
Our families, friends, colleagues and the CF team (consultants, nurses, dieticians, physiotherapists) all need a huge "thank you" for the constant, unconditional support they have given us so far and no doubt will continue to give us in the future. We often descriobe our day to day life and experiences so far as a 'Rollercoaster Ride' and boy is that true.
Freddie is a very special, determined but mischievious little boy. He is our special gift and is to be treasured accordingly. We would not change him or Alfie for the world and feel that we are both blessed and lucky to have such a special family.
Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity and make sure Gift Aid is reclaimed on every eligible donation by a UK taxpayer. So it’s the most efficient way to donate - raising more, whilst saving time and cutting costs for the charity.
So please be generous if you can but every little helps and will mean so much.
Kendra, Gary, Alfie & Freddie xx