Hi my name is Carren Bell and I am mummy to Ceridwen, Angel Lagan and Lochlyn. I have a partner of 13 years called Barry Grant. I began setting up Lagans Foundation following Lagans tragic death on the 26th April 2011 at just 15 weeks old. She had major heart defects and had to that point defied all the odds. She ran a marathon all day and night every day because her ticker just couldnt be fixed. Because of this she spent too many calories and was always tired so we had to feed her via a tube in to her tummy. Something we had never been told about before we had her. The days we had with Lagan after her surgery at home were extremely difficult and lonely. I became a nurse to my little girl 24/7. There was no help in the community. I was isolated and lonely and with no one to guide me I felt that loosing Lagan was inevitable! Not even the local hospital was trained enough to cope! I vowed that I should stop this happening to other parents in the future in the North West. What I didnt know was I was not that alone and it was happening across the UK!!!!! 1 in 100 children are born with congenital heart defects and then others acquire heart issues through viruses suddenly. To put that in to daily figures, 12-15 babies every day are born with none curable heart conditions and 1 in every 5 of those will not see their first birthday. Devastating and yet little is know in the general public. I have acquired the support of Alder Hey Childrens hospital and designed the first program in the UK to train members of the public so they can support parents in their local areas across the UK to enable them to have a rest, spend time with a partner, attend baby groups or play with other children in the family who often get left out. Quote from a parent this week This afternoon we had a fantastic time with our volunteer Rebecca! We went to the park and as she was able to help with Rowan I managed to do much more than I can normally do with his brother, Dylan. He actually started riding his bike properly, and was incredibly chuffed with himself for cycling all the way home on the pavement- before he couldnt ride in a straight enough line. Its a huge achievement for him and we couldnt have done it if Rebecca hadnt been there. Thank you so much! Its just the simple things, the things we all take for granted. The shower in the morning, breakfast, homework with siblings or even learning to ride a bike! TIME and time is free. I hope my work never ends and many others will join us over time to enrich the lives of families around us. Thank you for reading. Thank you for making Lagans Legacy amazing. Please take a look at our website to see how you could support our charity xxxxx lagans.org.uk
Posted on: Mon, 01 Sep 2014 18:11:58 +0000
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