Penelope C's quilt    (Quilt Completed)

Thank you

I have just received the quilt and I honestly can’t believe how emotional it has made me. This is something so special and we will cherish it forever. There are some amazing people in world and this is such a wonderful thing you do for children. I’m lost for words.

She’s currently napping but I can’t wait to see her face when she wakes up and sees it. I will send some pics later.

Beyond grateful. Thank you so much xx

Finished photos

Individual squares

Card

Stitched by: Kaz Bowen

Biography

In July 2016 our world was completed when our beautiful Penelope came into our lives. For 24 hours we were in a bubble of euphoric bliss. It became apparent after this that all was not well when Penelope had not opened her bowels and she needed life saving surgery at 2 days old. She had meconium ileus (sticky poo) which 90% of the time is a sign of CF. We will never forget the moment the surgeon told us, that this tiny little perfect angel had this awful condition that we knew hardly anything about. In that moment it felt like the world ended. Penelope had a stoma, to give her bowel a rest, which was reversed after a month in intensive and special care and she was allowed home. When she was 10 days old she had a sweat test which confirmed our worst fears.

In January 2017, she suffered complications from that first surgery. Scar tissue had caused her gut to twist, causing her bowel to block again. After 4 days of different procedures to try and unblock her (when the cause was not known) she underwent emergency surgery again. The surgeon told us the twisting had caused all of her organs to be moved around her body, she removed her appendix so that she could use the opening to clear her out more, and she even needed a blood transfusion. But the little fighter that she is, as usual, bounced back and managed to get herself home a week and a half later.

Since then, we have tried to keep her as healthy as possible and she has been doing reasonably well. But in order to try and keep her this way we have to take the following preventive measures - she has 5 syringes of medicine, around 19 capsules of creon, 20 minutes percussion physio when she's well, 40 minutes when she's poorly, and an inhaler 4 times a day. She has also recently had introduced a nebuliser to be used daily for treatment before bedtime.

She has had to have a treatment antibiotic once a month since July 2017 due to growing different bugs on her cough swabs and/or to treat a cough.

Anybody that didn't know about her story might struggle to believe what she has been through in her short little life and continues to go through on a daily basis. Her pictures and videos show a happy and healthy perfect little girl, which she is, and we plan on keeping her that way for as long as we can (with the help of her daily medicines and physio). She really is the joy in our lives (along with our handsome little son Teddy) and we thank God every single day for blessing us with her. She is cheeky, determined and the funniest little madam you could ever wish to know, and she has more fight in her than any adult I have ever met.