My granddaughter Mareyah has a life limiting condition called Edwards syndrome, this was diagnosed when my daughter Sonya was 20 weeks pregnant, Sonya was told that her unborn baby girl had a fatal foetal anomaly and was not compatible to life, the advice was to terminate the pregnancy as it wouldn't be fair to continue, as the baby would most probably die in utero, be still born, or if born alive only live for a few days. My daughter was devastated and confused, I immediately started to find out about this condition and yes when googled it did state fatal foetal anomaly and that most babies died before birth or soon after. However after some research I came across a facebook group called Trisomy 18/13 UK, in this group I was shocked to find babies and children alive with this condition, I asked a few questions and had the same answers from all the families, they too were told to terminate but had decided against it, their babies were born and whilst yes they do have disabilities both mentally and physically they were far from incompatible to life, . Sonya decided to continue with her pregnancy, and although we were faced with a lot of resistance Mareyah was born on 4th August 2015. We have had to fight for everything for Mareyah and seek support from an amazing doctor in North Carolina to get the medical support Mareyah needs, and this is because babies born alive with Edwards syndrome are not offered life saving treatment, just comfort care, the medical professionals are way behind with Edwards Syndrome and other life limiting conditions, and babies that might live if offered treatment are sadly dying. A conference to change this is being held in June, Consultants from around the world are being flown over to share their knowledge on medical interventions and support for babies with Edwards Syndrome, This will change so many lives, any donation is appreciated, or if you are a company why not sponsor the conference, email thegiftoflife@yahoo.com Thank you