‘If… a little word with a big meaning’
Obviously I am not a boy and some may argue that it is pointless to imagine how things would have been if I had been born male but I must admit that many times over the years I have pondered how different my life would have been if that had indeed been the case.
Not to start into a science lesson or anything but, as a carrier of Duchenne Muscular Dystrophy I have a faulty ‘x’ chromosome – its missing 2 little pieces. If my other perfectly healthy ‘x’ chromosome had been a ‘y’ I would have been born a boy and those 2 little missing pieces would have had explosive consequences for my future.
If I were a boy, I would have never pedalled my first bike, never climbed a tree. I would never have won a race or helped my mum with heavy boxes. I would never have played dodgeball, or skip or tag in the school playground. I would never have been able to jump – I mean clear air between my feet and the ground jump. I would never have enjoyed days of jumping off the sand pits at the back of the clay factory with my friend Aisling (risky either way lol). If I were a boy I wouldn’t have got the regular bus to school with all the other kids. I would never have felt the sheer exhilaration of dancing my heart out, arms waving to ‘sexy eyes’, my favourite song in Clubland as a teenager.
If I were a boy, I would never have done these things because it is a scientific certainty that those 2 tiny little missing pieces on one little chromosome would have given me Duchenne Muscular Dystrophy and the tiny muscles in my body simply would not have let me. I was born in 1981, the very cause of Duchenne would not have been found for another 6 years, I would have had little hope of a treatment and like most boys with Duchenne at that time, either my heart or my lungs would have given out on me and my life would have been over by my mid-teens.
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That would have meant that I would never have had the opportunity to go to University, to work the same old fast food restaurant and shelf stacking jobs that are almost a rite of passage for most students. I would never have been able to grow into a completely independent adult. I would never have experienced having my heart broken by what I thought was my first love. I would not have met some of the amazing people that I have met in recent years. I would not have trekked the Sahara Desert, would never have known the sheer joy of having children. I would not have known nor could I have ever imagined the technological world that we live in today. I would not be your friend on Facebook, you would never have had a text from me, I would never have dropped you an email to say hi, or taken a selfie in some random place. I would not have known the colleagues I work with today nor those I have worked with in the past, I would not have known many of the friends I have today. If I had been born a boy, my life would have been snatched from me before it had even really begun and the very thought makes me grateful for every experience I have had in my adult life.
I would never have had the opportunity to play my role, small though it is, in helping to end Duchenne once and for all. To try to make sure that being born a boy, with 2 little missing pieces of chromosome, will not mean that a kid’s life will be ended all too soon.
If I were a boy, I would not be here today. My parents would have buried 2 children by now and my sister would be an only child. I don’t even want to think about the impact that that would have had on their lives.
Those 2 little missing pieces caused the loss of my brother when he was only 16 years, 1 month and 9 days old. I was born a girl, a carrier girl with 2 little missing pieces but I get to live my life. My first born son now is missing those 2 little pieces but I will fight to the death to change the currently catastrophic consequences that they will have on his life.
2 thoughts on “If I were a boy…”
This is a sweet article and clearly was written out of love. I personally also thought that only boys could have DMD. That is, until 2 of my daughters were diagnosed with it. I fear that my sweet baby girls also will miss out on the things you describe above. I am disheartened that girls cannot participate in trials. I am hopeful that some of these new treatments will be approved and made available soon.
Thanks for getting in touch and sorry to hear about both your girls, it’s difficult enough having one child with DMD so can imagine how difficult it is with 2. Yes I am aware of a little girl here in Northern Ireland with DMD and a few in the UK and US, in the blog I was just explaining how in my own situation thankfully my healthy x chromosome was enough to make up for the faulty one but if I had been a boy and therefore didn’t have that healthy x then I certainly would have had DMD. Didn’t mean to imply that it is only boys who have it. You’re right though it’s not fair that girls can’t take part in trials, that’s bound to be an equality issue. How old are your girls? And is their mutation amenable to exon skipping? We are waiting for exon 45 skip :-).