Rabecca Thurecht, mother of a beautiful nine year old daughter, Maya, recently shared her deeply emotional and intimate story of caring for a child with a life limiting condition. Maya has Velo Cardio Facial Syndrome which is a genetic disorder with varying conditions in every child diagnosed with the syndrome.
“Your baby will be born with a very large hole in her back. Her spine will be exposed to the outside world. There is fluid crushing her brain and she has a condition that causes pressure to crush the brain stem. Until she has her first major surgery, her condition will be critical and the chances of her passing away in the first few days from infection are very high. She will have many surgeries throughout her life if she survives and her brain damage is likely to be severe”, are the opening words of Rabecca’s touching blog.