Because none of the doctors knew what was wrong with Ava, they sent her scan all around the world. Someone said it was‘ schizencephaly’, and that Ava had the most serious case they had ever seen.
So little is known about schizencephaly and our doctors could only give us one quarter of an A4 page of information about it. They told us the kinds of things she was living with. I knew I couldn’ t let my daughter suffer like that. So we decided to take her off life support when she was 12 days old.
Dale and I had only held her once before we knew what was wrong with her. But when she fell asleep, I held her hand. And then I held her in my arms as she died.
When my father brought me home from hospital, it took me two hours to get out of the car, and four hours to enter the house. I just wanted to drive back to the hospital to get her. Even now, I would give up my life to be back with her again for just two minutes.
We moved house soon afterwards. I couldn’ t cope knowing the empty room should have been her nursery. Every time I looked at that room, I thought of our plans and dreams for our daughter.
It’ s been just over a year since Ava died, and there’ s still next to nothing known about schizencephaly. And I know there are so many other rare and devastating childhood conditions that desperately need more research.
That’ s why I’ m asking you to support CMRI’ s research by making a tax-deductible gift today. Without this research, I know that babies like our little Ava will die of conditions like schizencephaly – and parents like Dale and me will be left grieving, and searching for the reasons why.
Amber