On Thursday 6th September 2017 at 14:00 whilst attending our babies 20 week anomaly scan at Hull Women & Children’s Hospital we were given the earth shattering news that our unborn child has a fatal condition called Bilateral Renal Agenesis which is where both kidneys have failed to form and in addition to that they lalso do not have a bladder, because of a lack of a renal system the amniotic fluid surrounding our baby has disappeared and will stop our babies lungs from developing and will cause physical deformity known as potters sequence/syndrome. This condition is fatal and will either lead to stillbirth or our baby will pass away shortly after birth. We attend bi-weekly hospital appointments to check if baby is still with us. We plan to donate any viable organs upon our babies death to hopefully save another family from a similar heartache. We are looking to start a charity project in her memory to help families like our who decide to carry to term despite a fatal diagnosis create precious and long lasting memories of their special angels and we plan to call it Ava’s Butterfly Baby Pathway. The project will include giving these families a making memories pack including a Journal to capture and treasure every precious moment you share with your baby, a copy of the book A gift of time, a story book to read to your baby whilst you are carrying them, plus many more ways to capture every moment. In addition to this we would also like to fund 4D scans for the families and if needed help fund gender blood tests if needed. Our mission is to raise awareness of fatal fetal conditions such as Potters Sequence and improve the support given to familes who are grieving for their baby even though they are still alive as resources are only really available to families who’s baby has already passed away and not before. Please help us prepare for her arrival and to say goodbye in a way that mirrors just how special and loved she truly is.