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