My 10 year old daughter has rod-cone dystrophy, SPD, high blood cholesterol etc...

by Joanna
(Singapore)

I have 3 kids, the first two was perfectly normal but my 3rd child was diagnosed with rod-cone dystrophy at age 4, and I just discover that she has SPD too.

Rod-cone dystrophy is a congenital genetic disorder where there is no treatment. She has very weak eyesight, but still able to attend normal stream school and enjoying watching her favourite cartoon programmes. I lived day by day, trying hard not to think when she will need to learn braille, when she need the white cane. But we talk about getting her a guide dog if one day she loose her vision.

Initially we thought she might have Alstrome Syndrome, a genetic disorder so we sent her DNA to USA for testing and it came back negative. And now, we just discover she has SPD. She was ok when younger but the symptoms starts to show over these two years. She is not only sensitive to touch, but also sound and movement. At one point, we thought she had hearing loss but now things starts to get clearer what she is going through everyday. It is tough but there are many more kids out there with more severe illness.

So instead of bury myself in sorrow, I now thank God that my child is by my side, everyday. Yes, she still suffers with all the issues with SPD but on the other hand, she still enjoys life quite abit. So to the parents out there, please don't feel despair. Life is too short to worry.