Soft UK is the Support Organisation for Full Trisomy 18 & 13 (Edwards Syndrome and Patau’s Syndrome).
My parents first came into contact with Soft UK through family. My Great Uncle knew someone who had a son with Edwards Syndrome, and after speaking to his Mother were put in contact with the charity. They came to visit me when I was in the Childrens Hospital, and they helped my Mummy and Daddy come to terms with what having Edwards Syndrome would mean, and what living with it might entail.
As Edwards Syndrome can vary so dramatically in each child/unborn child, parental experiences can be so different. I hope my story can help build a picture of what living with Edwards Syndrome might entail. It is unlikely that it will happen exactly like this for other families though. Some parents will be encouraged to terminate pregnancies, some will deliver still borns, some will deliver children who may only survive a few hours, some will deliver babies that may never leave hospital, and some will deliver children who they get to take home, even if it is just for a short while, and some will have children who will survive for longer periods of time. Soft UK can offer help and support for all parents no matter what their journey entails. They produce booklets which you can read called ‘Your Unborn child’ and ‘Your baby’ which cover areas relating to pre natal diagnosis, and caring for children with this disorder.
They have access to geneticists and experts in Trisomy 18, and arrange Conferences each year for families, to help provide information and support. We went to a conference in May, and we had a fantastic day. We met lots of lovely people, and my parents felt for the first time that they had found somewhere where they felt they fitted in. Siblings were encouraged to participate and there was a lovely balloon release to remember all the beautiful children who were no longer with us. Mummy and Daddy will release one for me next year.
Please click on the following link if you would like to learn more about SOFT UK, or contact them.