I've been following the campaign on Indiegogo for "Itty Bitty Bella", a little girl with osteogenesis imperfecta (OI, or Brittle Bone Disease) who needs money for the medical treatments that can help her to stop breaking bones and hopefully help her to be able to walk one day.
As I look at her pictures and the videos of this smiling beautiful little girl, I just keep thinking "this could have been my sister", "we could have had her, could have had this life." Instead of the one we ended up with.
I'm not sure exactly what the doctors told my father when my little sister was born nearly forty years ago - a few weeks early and with the severe strain of OI, the same strain Bella has - but the message essentially was that she was deformed, would have a very difficult time and would never have a normal life. He decided (my mother was under general anaesthesia at the time so didn't have a say in this decision) not to try to keep her alive. My parents donated her body to research, and I would like to think that she has in some way helped other children like Bella to be able to live full and happy lives.
What I am pretty certain the doctors did not tell my father was what it would cost us not to try to save her. The best way I can describe it is to say that the light went out of our lives for many many years. When I look at Bella and her family, I know that their lives are probably very stressful and difficult, that taking care of her must be a tremendous challenge. But I can see that their lives are filled with love and light. And when I look at her beautiful little face bursting with excitement, all I can think is: It could have been so different for us. We could have had that light in our lives too.
To donate to Bella's Indiegogo campaign, please go to: Itty Bitty Bella.