About

The One in a Million Baby started out as a personal blog, and is now a resource for special needs parents, families and communities.

Our lives are full of odds. When you buy a lotto ticket your odds of winning first division (in New Zealand that is) are 1:38,000,000, and yet people still fork out money every week for their chance to win big. When the circumstances are a little different and the odds mean something negative, like a birth defect or chromosomal disorder, we dismiss the much higher odds because we assume it won’t be us who make up that number. The rate for Downs Syndrome can be as high as 1:800 babies, but no one seems to worry, even though they probably buy a lotto ticket each week.

img_0490-2

I, like most people, assumed my baby would be healthy and normal in the medical sense of the word, and never even thought of the possibility of her having a complex medical story, that is until the 12 week scan.

In my eyes, Eva was already a one in a million because I have Polycystic Ovarian Syndrome (PCOS) and had thought it would be harder for me to have a baby in the first place. Since that first 12 week scan, it has been a rollercoaster of hope and disappointment, joy and grief. I discovered Eva was more of a rare jewel than most, and she was diagnosed with CHARGE Syndrome which left her blind and deaf, with heart and brain abnormalities.

Eva died in February 2015 due to complications around her breathing. Her death was sudden and unexpected and it came at a time when she was making such huge leaps in her health and development.

The One in a Million Baby explores my own journey with Eva and also the journey’s of other parents and their one in a million children.

4 thoughts on “About

  1. Tarrin

    Hello,

    I am working with Zco Corporation, one of the largest app development companies in the world, to develop an Android and iOS game that will be similar to Candy Crush. The differences will be that the objects will all be things you would find at a charity bake sale. The game will have in-app purchases, Facebook, and Twitter connections, etc. to raise profits.

    The purpose of the game is to raise funds for disabled children and their families. We want to buy handicap vans for children who need them. 50% of all game-sale profits will go directly into this fund, and 20% will go into updating and improving the game and producing more games for the same purpose in the future.

    What I am asking, is if you could mention our campaign to get this going slmewhere. Whether that be Facebook, Twitter, or on your blog, anything would be appreciated.

    Thank you for your time.

    https://www.kickstarter.com/projects/1935192940/charity-bake-sale-game-to-raise-money-for-handicap

  2. Nyssa de Waard

    These are fantastic. It’s so wonderful to hear these stories told like this. My son has a rare genetic condition as well as CP and one of the biggest take outs is the way we learn to cope and escape the darkest grief and hopefully give hope to others going through something similar. Thank you:

  3. Pingback: Why I blog | The Monster in Your Closet

Leave a Reply

Your email address will not be published. Required fields are marked *