On the 26th October i had a knock on my door from a nurse from Birmingham childrens hospital. my heart sank when she said she was here about Daisys heel prick test. Daisy tested positive for two strands of cystic fibrosis. one common and one rare. my world fell apart. it was one of the worst days of my life.
Cystic Fibrosis is a genetic condition that affects the lungs and pancreas. ultimately shortening life expectancy. There is no cure.
Daisy has to have preventative antibiotics twice a day. salt replacement twice a day. vitamin e once a day and multivitamins onces a day. Before every feed she has to have an enzyme to help her break down the fat and absorb it from her food. she has to have physiotherapy twice a day. Every week she is being weighed. every other week she is seen by the cystic fibrosis team at home and once a month we have to go to the hospital to meet with the consultant nurses, dietician and physiotherapist to see how she is progressing.
I am not ashamed to say i didnt know how to cope with it all. I have had some very dark days. but one day you wake up and you realise this is it now. All we can do as a family is try to do our best by her and give her the best life we can.
Myself and Rob have decided to try turn a postive. so we want to raise as much money as we can through various events for the cystic fibrosis trust who research into new medicines and one day possibly a cure.
so if anyone can help by donating or helping with any fundraising please get in touch.
This is for Daisy Ann Evans our perfect beautiful little girl. We love you so much and will fight for your right to a life unlimited everyday.
Thank you for taking the time to read this.
you can follow daisys story on Facebook on the link below
Sam, Rob, Grace and Daisy
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For Daisy Ann Evans
Fundraising for Cystic Fibrosis Trust
We work throughout the UK with one mission to beat cystic fibrosis for good
Charity Registration No. 1079049 (England and Wales) & SC040196 (Scotland)