Skip to main content

Should I tell my kids? A child’s view.

My name is Izzy. I am twelve years old and my dad is a sufferer of Kennedys Disease. Kennedys Disease is a rare motor-neuron disease that effects men and is carried by women.

Now I’m afraid I’m going to have to bore you and talk about chromosomes. We all know that we each have 46 chromosomes, 44 of these are identical. For women, the 45th and 46th chromosomes are X chromosomes. However for men, the 45th is an X and the 46th is a Y. So let’s take me for example. My Dad’s X chromosome has Kennedys on it, but his Y chromosome doesn’t.  My mum has two X chromosomes which are Kennedys free. As I am a girl my mum gave me one of her X chromosomes, and my dad gave me his X chromosome with Kennedys on it. So, I have two X chromosomes, one perfectly fine, the other with Kennedys.

So, I am a carrier. You may be thinking… a carrier? Wouldn’t she be a sufferer?  No. As I have two X chromosomes, the one with Kennedys is not powerful enough to affect me. But as men only have one X chromosome, it is powerful enough to affect them.

So that’s the disease explained in a simple way. My mum is one of the co-founders of Kennedys Disease UK (KD-UK), and has done so much for the charity.  She recently went to the first ever KD Patient day spreading awareness and explaining the work the charity does.  I have met and heard of so many wonderful people raising money and awareness for KD. I was overjoyed to have them home and to hear stories of what happened. My parents asked me to write and short story, if you like, about how I feel about KD affecting me and my family. As my parents have often told me, a lot of families feel worried or scared about telling their children they are a carrier, a sufferer or that their parents are affected by it. I’ll just say it flat out now. Tell them. Tell them everything. Of course if they are 8 or under I wouldn’t bother trying to explain chromosomes to them, but you get the point. If I wasn’t told I was a carrier, I think I would be quite upset. Last year my Mums friend Andy and some of his old friends from Chamonix (France) got together and organised a charity bike ride from Chamonix to Venice. By this time, I already knew about KD and my Mum asked if I wanted to come along and help. I said yes, of course. I said yes because these people doing the long difficult bike ride were doing it for us, for their friends, for all Kennedys Disease families out there. I felt it was the very least I could do. I even asked if I could a bit of cycling up some of the hills but I was turned down by my Mother, who smartly knew that an eleven-year-old girl could not cycle up Stelvio and down it in one day. I must confess I wasn’t too disappointed after I’d been up and down it in the support car!

A lot of people I find (especially my Mother) get teary over  certain things. She gets teary over people’s kindness to the charity, with others it could be if a pet died. But, I got my Fathers’ genes on this one. When my parents discuss my future with Kennedys, I remain serious and calm and talk about it as if it’s simply a homework project. My Mother can get teary and my Dad and I are just discussing it like a conversation about the weather. When we have charity events and my Mother is told to give a small speech, I assure you, there will be some tears. Not just from her though, from the audience too! My Dad, myself and a few other members of the crowd are watching my Mum giving her heart-aching speech, inspired, but at the same time embarrassed. If I show my emotions about a certain thing physically, it gets to me mentally. But if I am mentally strong, my physical state remains calm. If your child behaves in the same way I do about subjects like these, then it will be a piece of cake.

At home, I don’t tend to think about my future involving Kennedys. I worry about homework, jobs and all that boring stuff that gets to us all. I never consider children of my own. But now writing about it I am having to think long and hard about it. I feel that all I want to do now is help, and at the least produce ideas for fundraising and awareness. My Dad always says to me when something goes wrong, “Izzy, we can’t change the past, its already happened. We can’t change the future; we don’t know what’s going to happen. But we can change now. We have the power to do what we want. And if you want to change something and make it happen right now, so do it now.” When he said that to me, at the time I would be annoyed like any child that he was speaking so wisely to me, like one of those kung-fu masters or something. But when I look back I am grateful for it, because we all have the power to do something. Don’t wait for the future to come. Do it now. Help me. Help my family. Help all Kennedys sufferers. Help change it and make it right. Tell your kids no matter how old they are. Go from whispering to your six-month old baby boy in his cradle, whispering that he will suffer, but you will be there to help take the pain away. Go from tucking in your 9-year-old twins into bed and telling them that you are a carrier or their Dad is a sufferer. Go from calling a family meeting with your 12-year-old daughter and telling her she is a carrier. Be honest and it will go well. Like my parents have always said, “Tell us the truth now and you won’t get in trouble, if you don’t we will find out and then you will be in trouble.” I know this may sound like something you would say to your child when you suspect they have stolen a sweet from the jar on the top shelf, but it’s true. In this world, anyone can find out anything. You could be risking a whole relationship with your child.

I’m glad my Mum and Dad have been honest with me about Kennedys Disease…I wouldn’t have wanted it any other way.