World Duchenne Awareness Day falls on 7th September every year. This is in recognition of all those with Duchenne and those that have also left us too soon from this devastating condition.
Unfortunately this is our 3rd time of raising awareness on 07/09. Let’s hope you can support us with more of William’s red balloons than ever before on all your profile pictures.
This is in recognition of the 79 exons on the Dystrophin gene. A small genetic fault in just one of these exons is all it takes to cause Duchenne Muscular Dystrophy. Duchenne is the largest genetic killer of children, yet remains largely unheard of. It occurs in 1 in 3,600 male births, with just 1 in 50 million females being affected to the same severity.
How did this happen to us?
A question I will always ask myself. I was tested (& although for 6 months led to believe by the expert geneticists that I was a carrier) found out many months later that in fact I was not a carrier and they had well and truly f**ked up.
Something I’m not sure I’ll ever really get over.
That feeling of guilt, of loss, of anger.
So how did William get DMD?
Well, he developed a spontaneous mutation of the gene when conceived. So total and utter shit luck that could happen to anyone.
I am humbled by the support we have had since diagnosis from many old, but many many new friends on our journey since January 2016. It has changed us forever and we will certainly never be that 2.4 children sitcom family! We are the family with the boy with Duchenne, the one with wheels, the one who cannot run, just The One!
So to recognise him and his amazing way of living with this horrible disease I ask that you have his balloon as your profile picture, show him your support and send him that virtual hug. Whether you just do it on 7/09 or for the days leading up we’ll be so grateful. Please tag his facebook page on the balloon to spread the word of our cause too.
Thank you all
We love you all
Let’s fight the fight and save my boy 💙👊💙