I can't tell you enough how grateful we are and how Edith absolutely loves her quilt. With Cystic Fibrosis, she gets very hot and sweaty, even in Winter and she now has this quilt on her bed permanently with a thin protective cotton sheet underneath, which she finds perfect! It has made this 3rd lockdown much more bearable with the thought of such kindness and especially seeing all the names of the volunteers on the quilt and where they are from, made her feel very special. Thank you so much
As our firstborn and with no indications during pregnancy, it was a complete shock to be called into the hospital when our daughter was 3 weeks old and told that she had been diagnosed from the heelprick, with the inherited life limiting condition Cystoc Fibrosis. Although I knew what the condition was, neither I nor my husband had any idea what this would mean for our daughter or how it would change our lives so fundamentally. Shock and fear first hit, then the guilt we'd 'given it' to her. In hindsight, in the first 3 weeks there were signs; the inability to feed the first few days she was born as she was so lacking in energy, the multiple feeding soon as she did start taking milk, the smelly, explosive nappies and the weight gain was not as expected.
Edith was quickly given pancreatic enzymes and vitamin supplements. We were taught manual physio to clear her lungs and nebulisers soon followed. Edith coughs, and clears her lungs a lot, especially at night when flat which disrupts her sleep and fatigues her daily.
Edith needs to eat a LOT, and struggles to be at a normal weight. She gets continual lung infections and has multiple antibiotics and several 2 week hospital stays for IV antibiotics, a Bronchoscopy and intensive physio to clear her lungs and infections. Edith's daily regime is over 40 tablets and intensive treatments and she has to miss school and many activities her friends are allowed.