Hello, I wanted to raise your awareness to a condition that we have all heard of, but we don't all understand - Cystic Fibrosis. My little boy was diagnosed with CF through the newborn screening test at 14 days old. He is our first child. We had an idea what Cystic Fibrosis was, but not what it meant or is. We were very quickly introduced to a fantastic CF team at our local hospital who helped us understand how to look after our little boy and manage his complex medication and physiotherapy with a positive, fun approach. We have to be very careful about coughs and colds and particular environments we place our little boy in. This is so that we limit damage as much as possible.
We know our child will have colds and coughs as there are viruses about all the time and he still needs to build an immune system. He is 21 months old and thriving by the way!
With all of this to deal with we hoped we would be able to meet other parents and their CF children - we can't. The reason for this is that CF children and adults cannot mix together due to cross contamination, which could cause further problems. We are very isolated as a community and this makes speaking out as a collective voice very difficult. I once described it to a friend of mine as a secret door that has been opened where you can only hear voices, but you can't see the people speaking.
My cry for support is to raise awareness of Cystic Fibrosis, to bring to your attention the isolation we all live in and to tell you that there is light at the end of a very dark tunnel.
Research into finding a cure for the condition is brilliant - the CF Trust (www.cftrust.org.uk) are supporting research into Gene Therapy, along with other projects, there are antibiotics available that weren't a few years ago and now there is a drug that could save the lives of some CF patients - Kalydeco. This drug has been licensed in the states and we really need it licensed here in Europe. It does cost, but in the long term it will save the NHS a lot of money that could be used elsewhere. Please help us by telling your friends, lobbying your local MP, NHS services and help us see off CF. :)