Nicole Grace Bevan

In loving Memory of your Precious Daughter Nicole Grace. She was born on 4th June and had to go to special care as she was grunting which turned out to be nothing. We found out at her 6 week check that she was abit floopy and was asked to come back. We ended up getting admitted for a day and lots of tests which all came back fine. In the middle of september she started to stuggle eating and wasnt gaining weight and kept turning blue. She was rushed in after a blue episode which she didnt really pick up from and was in hospital for a week. During that week we was told that she had SMA type 1 and most babies dont live to there 2nd bday. We took her home when she was well enough with an ng tube to try and help her gain weight as she had lost nearly 1lb in a week. We quickly got used to her new routine and medial equipment we used. On 14th Oct she had a blue episode which 999 was called and they examined her and told us she had a slight mumour on her lungs. They arranged for a community nurse to come and see her and sort out Anti biotics. Things started to look better till 20th ctober when her medication for her secreations was changed and made her very poorly, We contacted her nurse who told us to get community nurse to visit and check her over. The nurse came out and was horrific to us she never examined her or anything even after we had told her she was bringing yellow flem up. She left our house that day with us in tears. We decided there and then things needed to be changed as her care and imformation wasnt very good. She started to improve and seemed abit brighter so we decided to see how we go aand if wasnt happy in morning would take her to A&E. She woke at 5am and was very clingy and just wanted to stare. I gave her a cuddle and put her back to bed to rest. At 7am she started to make strange noises so i looked up at her and she was blue struggling to breath we jumped in and done everything we had done before. An ambulance came and we went to hosital things happened so quickly and at 8.45am she took her last breath in mine and her daddys arms. We want to raise awareness about Nicoles condition and hopefully try to find a cure. Nobody we spoke to knew anything about SMA including some medical professionals and apart from 1 nurse we had contact with she was poorly cared for. We dont want anyone else to suffer the pain we are going through its horrific and living every day without Nicole is so hard. She will be missed so much and our lives will never be complete again. She was always such a happy little girl and losing her was a total shock. She is gonna be missed so much and there is such a hole in our life. We love you Princess so much and will always be in our heart