As a newly diagnosed parent
Things you should know
So if you’re reading as a newly diagnosed parent, I can tell you this: on our diagnosis day, I thought my heart would give out before we reached dinner time. Then, I thought I would have a nervous breakdown when we had to start dealing with physio, night splints, steroids and more. It was not easy, but none of the disasters I imagined manifested – after the diagnosis, nothing else hit me as hard.
Take each day and each moment as it comes and don’t think too far into the future, none of us know what it holds for us. Unbelievable as it seems on the day of your diagnosis, you will find your own way through this, you will laugh again and you will be happy again, even if life will become more complicated. It’s as if Duchenne gives you a new pair of glasses to view the world, giving you a superpower to see things you might have missed before. With this new vision, you will see some wonderful things and get a crash course in how simple things can bring you so much joy. Above all, don’t forget that you’re not alone on this journey, and that other Duchenne families are here to help you on your way.
This article is written by Omaira Gill, journalist living in Athens, Greece. She is married with Dimitrios Athanasiou and together they have two sons, of which one has Duchenne muscular dystrophy.