7th September is a date now etched in my diary, not for anything other than to raise awareness of the rare fatal genetic condition my son has, it’s not an Anniversary I wish to celebrate, but one I feel I have to.
7/9 depicts the 79 Exons on the Dystrophin gene. Just one small fault on any gene causes Duchenne. Please help us by sharing this picture and making it your profile for this 1 day – or longer if you wish!
Thank you to those that have already changed your picture. 💙
With William’s page we constantly wish to raise awareness of duchenne, of its complexities, of its emotional pull on the whole family, of its ultimate destruction of my son’s body. It is not always easy to read, but believe me it is much harder a life to live.
We post some amazing adventures we have, filled with love, smiles, laughs and joy. These are genuine. But don’t ever think that as a mother to a boy with a condition meaning his muscles are getting weaker, those smiles sometimes disappear and a huge black cloud appears over my heart and a jolt of reality kicks in.
Since last year William is now on full time steroids to keep him going physically and even medication to protect his precious little heart. He’s been to extra physio to try to keep his strength up, seen more specialists than I would care to think of and upped his holistic therapies too.
The majority of you are so lucky to never have to make these medical decisions for your precious little bundles…. please remember that.
Life passes by, and although there are fun times, there are also lots of stressful times – at hospitals, making decisions, seeking the best advice from research papers, trying to keep my head above water when all I want to do sometimes is sink.
The awareness of duchenne has increased ten fold amongst our friends and social networks, which I am so grateful for.
Remember though, that hurt myself and Matt felt on diagnosis day still hasn’t gone, we still need support and we still need many friends in our life to keep going and keep sane. Thank you, as always, to those rocks who are always there for us. We totally love you, even though maybe we don’t say it enough, but thank you.
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