I did want to make time to write about the thing that struck me most on my weekend in Sydney. I have a friend, she's already been through a lot in life. She lost her best friend to a horrible invasive cancer, and she has the most adorable boy, and he's so sick. I had breakfast with her Saturday morning, and we got chatting for quite a while. She's an amazing woman.
Today would have been her best friends birthday, I don't know if that makes this post good or bad timing. It's not really either. I just wanted to write about what she is going through now. Her 15 month old son has HLHS, a heart condition called Hypoplastic Left Heart Syndrome. You can read a little about it here - it isn't easy reading and I find it hard to get my head around the science and the technical things.
He has half a heart, and it's amazing that he has managed 15 amazing months. I think things are misunderstood a little because he looks so healthy and happy - people tend to forget just how seriously ill he is as a result. When I spoke to my friend about it, trying to understand it and how it effects their every single day, and how she manages... some of the stupidity she faces from people who don't get it... It made my head spin.
What perspective it gives to see someone who copes with this every moment of her waking life. She just goes on. I know she has to, but.. how?? I don't understand a lot about the condition yet but I am reading and I am learning. What I have read is terrifying. Makes me want to do something. I believe that HeartKids is a great organisation to support for families going through this hell. Heart Kids works towards reducing both the incidence and the mortality rates of childhood heart disease. There's one in each state. You can volunteer or donate, support fundraising, buy merchandise, sponsor... There are a myriad of ways. Check them out, and contribute. The families you are supporting need places like these. The children who are going through this and all the operations... they need it.
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