Judging others.......

It makes me sad to think that in our DMD community there are people judging others for so many silly reasons, As far as I’m concerned the choice to put your child on steroids is a personal one, your choice to have children knowing you’re a carrier is a personal choice, the way we raise our boys and the treatment and care options we choose are all personal choices no-one has the right to judge one another over these and many other DMD journey choices! One thing we all agree on is finding a cure for every boy and girl that suffers from DMD, I recently heard a mother refer to “Mutation Envy” and thought WTF and why did someone come up with such a ridiculous term that sounds so vindictive, I am one of the mums whose boy does not have a Deletion that can be helped with Exon Skipping, my boy has Duplications that only occur in a small percentage of boys & Girls with Duchenne, Of course I wish my boy could also be helped but I am so so happy for the people this will help, it is a stepping stone as far as I’m concerned and one day hopefully sooner rather than later they will be able to help every single person suffering from this condition, put yourself in our situation of course it’s disappointing that they can’t at this point help all our boys & girls but I would never ever be angry or mad that they can help other people with this exon skipping it’s such a wonderful amazing breakthrough for Duchenne for mother’s to point fingers and say people have Mutation Envy is just plain spiteful and hurtful I know I certainly don’t feel that way any breakthrough for DMD is just awesome!!

I was recently attacked by another DMD mum for having my son knowing he had DMD and for having my 5 children knowing I carried DMD, I was so hurt and upset, she went on to tell me what a selfish mother I am for bringing a child into the world to suffer such a terrible hideous life???? Sorry I do not see it that way, My boy will have the most amazing life surrounding by people who love and care for him, what is so hideous about that?? Our choice to have Kye knowing he had DMD was our choice to make and nobody has the right to judge our decision, yes you can have your opinion on the subject but you have no right to attack me, we are all on this DMD journey together how can other judge a situation they have never been in? I always said I would not go through with any of my pregnancies if the baby had DMD but saying that was different to living it, it was the most hard gut-wrenching decision of my life and I stand by the decision we made it was what was right for us at that point in time and I am so thankful and feel so blessed to have such an amazing awesome little guy in our lives, DMD is only a small part of who he is.

I know some mums have been criticized for the way they are grieving for the children they have lost, there is no rule book on how to grieve every single one of us grieve in different ways I can’t even believe that people would judge someone who has lost their child, it is the most heartbreaking thing us as parents have to face in life, my heart goes out to everyone who has ever lost a child My wish is that no parent ever has to lose a child the DMD ever again, but sadly I can’t make that a reality.

I cannot even fathom how anyone can criticize another person who is living the same journey, we need to be in this fight together, we need to be there for one another with unconditional empathy and understanding. I am so grateful for the amazing people I have met from all over the world on this DMD journey, Your constant love and support has helped make me stronger and given me so much more hope, I thank you all from the bottom of my heart! My young son’s journey is only just starting out and I know there is going to very hard days ahead but with the love and support of our DMD community we will face the challenges head on and not let DMD rule our world!!!