Saturday 25 September 2010

Achromatopsia in the press

Well, ok, so it's not mainstream media but Woman's Day is about the most widely read weekly woman's magazine in Australia so it must count for something:



Aside from calling it "Chromatopsia", it's quite nice to have any of these kind of human interest stories that raise awareness. I do think the parents missed an opportunity to raise funds for research and gene therapy by mentioning some such organisation as Foundation Fighting Blindness or Australian equivalent. It's a pity they didn't reference any future possible treatment at all. It might have given the story a little more poignancy or urgency. Maybe it's not the magazine's policy, but I couldn't see a particular point to the story (it's mainly just, "Here's our blind kid").

I do get sad when I see pictures of children walking with white canes. I am very, very much in denial about this part of Charlotte's future. I know not all Achromats use them but it has been a bit of a shock to realise how many actually do. I still joke that a guide dog is the only way this family are getting a pet!

My Mum has been very comforting about this for me. She is very good about the one-step-at-a-time stuff (so is M, so I am very lucky), she said that whatever Charlotte needs at whatever time, I will be glad to get for her and I will adjust to whatever it is at the time it is needed. One step at a time. And don't borrow trouble.

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