And onto the last of the day Emilys star another trisomy charity , emily was born with edward syndrome , those who havent already liked have a look and read there inspiring story , Loads of love Katie Elmer 0ur mission is to one become a registered charity (Registered June 2013 - Registered Charity Number - 1152520), to help out families and nurses across the UK. We want to help children with life limiting and life threatening illnesses by helping to fund specialist medical equipment & days out before its too late. And two is to raise awareness of Edwards Syndrome. If you would like to help us achieve our mission please spread the word of Emilys Star with your friends and family or make a donation so we can start to help these families. To make a donation please go to emilysstar.co.uk and click donate. Thank you Description Our Story. I had a fairly normal pregnancy up until 36 weeks when it was discovered that my baby was smaller than she should be, I had a week of scans and tests until it was decided to induce my labour. My labour was induced which ended with an emergency c-section. Emily was born at 9.56pm weighing a tiny 1.97kg, 4lb 5oz. Emily was rushed to the Neonatal unit to receive the care that she required. I finally met Emily 14 hours after she was born but the occasion had a grey cloud hanging over it as we had been informed that Emily possibly had a rare syndrome called “Edwards” or Trisomy 18 not that any of that mattered to me when I had my first cuddle with her, so small and tiny yet absolutely perfect, I was a mummy to a beautiful, amazing and strong little girl and I couldn’t of been prouder. The following day it was confirmed that Emily had Edwards Syndrome, a syndrome which was not compatible with life and we had been advised that Emily may only survive for 4 days , I felt my whole world turn upside down but I was determined that I was not leaving the hospital without my beautiful daughter. That day I packed up our things and we took our first ride home together. We had a wonderful christening that evening with friends and family and Emily enjoyed all the attention. The next day we met her nursing team “children with complex needs nurses“ , the matron of the team, Teresa came round to us at home and brought with her everything we needed to care for Emily at home. Without the nurses we would have been unable to bring Emily home, the nurses were there for us 24/7. The first night at home the nurses came out on more than one occasion as we were worried about Emily, the nurses reassured us and helped us to settle Emily and our own nerves. From then on we knew that whatever we needed day or night the nurses would be there for us. They made daily visits and phone calls to check how Emily was doing and also how her Mummy and Daddy were coping, they came out whenever we needed them, even at 1am on a Monday morning as a certain little lady pulled her feeding tube right out of her nose……. Emily was proving everyone wrong, we made it past the 4 days, past the week, two weeks and three weeks but Emily ran out of fight and passed away at 26 days. Those were the most valuable and precious 26 days of my life and I owe so much to the nurses who helped me have the them days with Emily. The nurses allowed Emily to meet her grandparents, aunties and uncles & little cousin, meet her godparents and all the wonderful family and friends which loved her so much. Which is why I have decided to make something positive out of this awful situation and to raise funds for the children with complex needs nurses. General information This page is designed for two reasons, 1 to raise awareness of Trisomy 18 (Edwards Syndrome) which is a syndrome that I had never heard of until my beautiful Emily was born and the second reason is to highlight the amazing nurses which cared and supported Emily, myself and her Daddy during her short 26 days with us.
Posted on: Thu, 24 Oct 2013 16:45:03 +0000
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