In January 2014 I was elated to have a beautiful healthy baby Girl. By the beginning of February I was devastated as Florence had been diagnosed with Cystic Fibrosis. Now 6 years on the years have passed, the sadness has subsided and the most incredible little girl has emerged.
Florence is definitely a fighter. I asked her what CF means to her. Her reply was interesting. She said that she takes medicines as her lungs do not work properly. I asked her what the medicine did and she told me that it makes rings in her lungs and fishes jump out of it!
In reality what it means is a very structured day for Florence. We start the morning with her nebuliser. That chops her mucus into smaller bits, then It makes Florence able to cough this out of her lungs easier.
She then has her Orkambi. This is a drug as a family we have been fighting for. It costs £104,000 per year. However, for Florence’s mutation of CF we have a 40% chance of her lungs working more effectively. She has been on this for 3 months – the whole of lockdown. So fingers crossed! At the moment her cough has disappeared.
We are not sure if this is because of the Orkambi or because she has been isolated for the last 3 months so cannot get any bugs. Either way it’s wonderful to not hear Florence have to fight to catch her breath.
Back to Florence’s routine. Then she has a fatty snack, milkshake with no icon (to encourage better bowel movements!) pro-cal powder which gives extra fat as Florence does not gain weight very easily. She doesn’t really like food unless it’s chocolate muffins or Rolo chocolate pots!
Then Florence has the smallest breakfast ever! With all the fatty snacks and protein foods Florence has to have her ‘magic sprinkles’, which is creon – an enzyme that breaks down the protein and fat so the body can hold on to the good parts. Florence also has her extra vitamins as people with CF tend to not be able to keep certain vitamins in their body.
After breakfast Florence does an exercise routine, then we do school work, lots of snacks in between. Then next is the nebuliser which also acts as physiotherapy. If Florence has a chest infection this really clears her chest. Then lunch. Then play at last! Back to some exercise. Dinner, Orkambi, milk with extras then bed!
Florence has a busy day fitting in all of her treatments. But she smiles throughout and does not let anything phase her. Everything that Florence does is with a unique sense of humour and cheekiness! So instead of tears for Florence we just have the biggest smiles as she is amazing!
