What do we Lose if we “Cure” Down Syndrome?

Yesterday morning I heard something that really made my blood boil for the first time since Wade was born. I got into the car to hear a local celebrity scientist on the radio discussing an item from the day’s news. Recent research has developed a technique for potentially shutting down the extra chromosome in the cells of a person with Down syndrome. The short term implication is the potential to develop new gene therapies to treat some of the health issues more commonly associated with DS such as hypothyroidism, leukaemia and early onset Alzheimer’s. The wider implication is that this technique may be used to ultimately turn off DS in the embryonic stage effectively “curing” it.

It wasn’t this in itself that made me angry, it was the description this scientist gave of Down syndrome. She called it a “devastating” condition. There was joy in her voice as she described how this discovery had the potential to eradicate DS all together. And I thought to myself…this is my son they are talking about here. Maybe I’m just an over protective mother ready to leap to the defence of my child (well, I was when I fired off my aggrieved text message into the station!!) but it also had me thinking about what is really at stake here.

20130719-142126.jpg

Continue reading

In the blink of an eye

This happened a week ago but I wanted to wait before publishing. I always prefer the tone of a piece written at the time so I am going to leave it in the present tense.

I nearly ran over a toddler today. It was one of those moments that you play over and over in your mind. So much happened in a single second and the more I think about it, the more I realise how removed and separate I was from it all. Thinking about it with hindsight, I wonder how much of what happened was dumb luck, or a little bit of everything I ever learned about anything leaping forward from my sub-conscious to save this tiny little dot.

I was driving along a 4 lane road in an area that usually has some pretty dodgy drivers around. I drive this road a lot and have had to share it with some diabolical road users in my time so I usually keep some idea of where other cars are around me. Up ahead I saw a police car that had pulled over a driver on the other side of the road. The lights were flashing and whenever I see this, I try not not see it. From my time in the police force, I know that one of the worst places on the road for a bingle is right next to a police car with its lights flashing because everyone rubber-necks! They slow down and turn their heads to see what all the excitement is about and often it ends up in a rear-ender. I drew level with the police car and then….

Continue reading

Sleep and other Nightmares

Our honeymoon period is officially over. Up until recently, Wade has been dream baby, day and night. Sleeping was his forte. It was always fun to freak out visitors when I went to put Wade down for a sleep. I would return after a couple of minutes and he was already asleep. No screaming, no yelling, no tears. It was a pretty cool party trick.
During the day, his naps would last for about an hour and he woke up smiling.
At night he was out by 7pm and the evenings were our own. Usually he would wake up a couple of times overnight but we could usually settle him easily.
Yep, I was that annoying mother with the bewildered look on her face during conversations about what to do with screaming, inconsolable children.

“I don’t know, we just don’t have that problem!”

Then it all changed…. Slowly and gradually, it crept up on us. I can’t really remember the moment when my little piece of paradise began to crack and drift free. Maybe he had a cold and was a bit restless or maybe one of us just didn’t have the patience to go back in there during the night. Somehow though, Wade got wise to us. He worked out that if he cried during the night, we would bolt in there convinced that something diabolical must be wrong. He worked out that if he didn’t take the dummy or wouldn’t settle, we would pick him up and cuddle him. He cottoned on to the fact that if, (after laughing in our faces at the idiots we were for falling for this trick), we decided to put him him back in the cot, he would up the ante using real tears. (I’m not making this up, he actually laughs)

Continue reading