Aniridia itself means an absence of an iris – which controls how much light enters the eye – but often comes with complications such as cataracts or glaucoma, and that’s usually what makes the sufferer’s vision worse.When I was a young woman in my twenties my condition was stable. It was so out of the blue it took a long time to sink in.
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I was pretty independent: I had a job, as a bank clerk, and a husband. And I’d grown up around people with vision impairments, so it all seemed fairly normal to me.
I always wanted children and knew that the chances were some of them would inherit the condition.
I am so proud of how he copes with having a disabled mummy.
I fell recently and Zed just stopped what he was doing and came and sat next to me, holding my hand until his father came back from the other room.
What I hadn’t bargained for was conceiving twins and a sudden deterioration of my sight during pregnancy. I’m sometimes asked if I feel guilty about passing it on, but why would I?
I don’t know why this was – I’ve never really wanted to look into it. Everyone faces the potential of having a disabled child and if we didn’t have children because of that there wouldn’t be many children in the world.
Strangers like to come and look at babies in prams, but they would never guess the baby belonged to the woman on the sideline in the wheelchair.
When he was newborn I would wear him in a sling on my front while Chunky pushed me in my wheelchair. When Zed first started walking I wasn’t able to look after him on my own at all.
My neurologist thinks I’ve had RRMS since I was about 13, which developed into SPMS.
This is quite unusual and means my condition is advanced for my age, and that it’s harder to give any kind of prognosis for the future.
But I’d never felt like I’d missed out on anything.