Approaching The Future With Cystic Fibrosis

Cystic fibrosis is a life altering disease. How do you approach your life and future living with it?

My grandaughter Raé is only just 2 and she was born a fighter. She spent her first 4 months in hospital, 3 operations in that time. She has a fast-track straight to the children's ward at anytime in our hospital. Despite this she is a brilliant Ray of Sunshine, completely loo la and so funny, so full of life. We are optimistic that new drugs will be found to lengthen her life expectancy as time progresses thru research. I don't dwell on a short life for her, Rae is here to stay for 80 years at least.

How do you stay positive and prepare for the unexpected?

We remember we have been blessed with a very bright star. When things are hard, we allow ourselves to cry and admit to everyone that we are having a hard time. You have to be able to do these things. We remember we are not perfect but we are still here loving this beautiful little girl. No words can describe how much we feel blessed and love her.

What do you want others to know about cystic fibrosis?

It's a debilitating, cruel disease. It robs children of the energy to run around like all other children. You are living on your wits all the time and pushed to your limits at the sound of a sneeze, a sniffle, a cough, a wheeze, a rattly chest, or laboured breathing. You are on your guard all the time, and you never truly rest and you never switch off from everything to do with this disease. This disease with Raé fills your everyday completely. At night you don't switch off and even in your sleep your senses are highly tuned into her, her breathing, her noises, her motions., and emotions, but one thing for sure, we have the most special little lady in our lives and we will keep making people aware of this horrid disease, for her sake.