Brodee McKenna, 4 years old with Rett syndrome

“Brodee was officially diagnosed with Rett syndrome at two years and two months of age, but we had suspected something was wrong since she was 13 months old. At this age she was able to play with toys or hold a biscuit, but everything she picked up went straight into her mouth. We were trying to stop her from doing this then she stopped holding toys all together. She hadn’t started crawling or walking and we noticed she was grinding her teeth and would have episodes of screaming fits day and night then on other occasions laughter fits. When the doctor suggested Brodee may have Rett syndrome we looked it up on the internet and saw that Brodee had all the symptoms except for seizures at that stage.

It took 10 months from when the doctor first suspected Rett syndrome to the day it was officially diagnosed. It was a horrible, long wait, we knew something was wrong with our child but had to wait 10 months to find out what it was. Then Brodee started wringing her hands, a major characteristic of Rett syndrome, and we knew that Brodee had Rett syndrome.

Brodee is not a disappointment to us, but finding out she had Rett syndrome was very difficult. Brodee will miss out on things like marriage and children, that’s not a disappointment you recover from in a day or weeks, you grieve for a long time. Brodee is happy but she will never do the little things that other girls can, like bug me about what she wants at Christmas. We felt shattered when we got the official diagnosis because of all these things that Brodee would never be able to do.

We have two other daughters who have had to grow up very quickly since their little sister was born. They’ve become much more sensitive to people with disabilities and have learned how to explain Brodee’s syndrome to their friends. There’s nothing hidden from the other girls. When we go to hospital, they come too so they can see the doctors are trying to find answers, not hurting Brodee. They’re checking to see that Brodee isn’t developing scoliosis or breathing difficulties and making sure the risk of seizures is minimised.

Brodee goes to a main-stream pre-school once a week where she has a one-on-one support teacher. When Brodee’s not in pre-school she loves to watch tv, I have to carry a dvd player with me wherever I go! When Brodee sees a familiar face she sprooks up and is happy, she also likes to go for drives in her Poppy’s 4-wheeler bike and feel the wind on her face. Brodee is in a wheelchair because she can’t walk on her own, she’s very comfortable in the c hair because she likes to sit up and be mobile.

I don’t wish anyone to go through with what we have. We’re gifted with a beautiful child but Rett syndrome is a life-long responsibility. Not only are Brodee’s future goals and hopes taken away, but so are ours. We’ll never have sleep-ins in the morning, we won’t come to a stage where our kids are old enough to walk themselves to school, every day there’s a new hurdle. But there’s light at the end of the tunnel, we meet the challenges. My hope is that scientists can find a cure for Rett syndrome, and maybe hopefully by the time my other girls are having their own children.”

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