Erin's quilt arrived today. It's even more more beautiful that I imagined, for once my little chatterbox was lost for words. Thank you so much ladies, you are all amazing Ã¢â„¢Â¥ xxx
It really is so stunning, gorgeous pink floral backing fabric too. Erin loves it so much, she read all the names out and thanked you all individually before she went to sleep wrapped up in it last night. Thank you ladies xx
Erin was a happy baby but had a constant cough and cold and failed to thrive, despite taking massive feeds. She was eventually diagnosed with Cystic Fibrosis following a sweat test whilst in hospital with bronchiolitis at the age of almost 5 months.
Apart from regular medication and twice-daily physio, Erin's first 5 years post diagnosis were fairly easy for her, with no hospital admissions! However, unfortunately during the last 3 years Erin's condition has deteriorated greatly. She now spends 2 weeks in hospital for intensive treatment at least every 3 months - more often if she is unwell.
When well at home she has at least 2 physio sessions per day, 3 nebulisers, long-term antibiotics, (which will be increased to 5 per day at the end of this latest hospital stay), overnight feeds through a gastrostomy and she has to take enzyme tablets before she eats, totalling between 25 and 30 tablets per day.
The gene mutations that Erin has which cause her to have Cystic Fibrosis are usually only known to cause mild symptoms but unfortunately Erin has a very severe case of this illness. She will not reach the average CF life expectancy of mid 30s, in fact it is unlikely she will live past her teens. I have recently been told that there is a very high chance that she will never be eligible for a lung transplant, which would give her a second chance at life once she is headed towards end stage.
Despite all of this, Erin is a very happy little girl who lets nothing stand in her way. She will run a mile screaming if she sees a spider, yet will happily and excitedly skip down to the operating theatre full of giggles!