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Story of a parent

So you just got diagnosed. Welcome!

A diagnosis such as Duchenne Muscular Dystrophy comes as a terrible shock, whether or not you had signs and suspicions beforehand. This is not how life is supposed to play out. Your cute little kid is supposed to meet all his milestones, grow bigger and stronger and have an immunisation record book, not a fat file growing fatter with medical papers.

But life is unexpected, and if there is one thing I would have found useful on our diagnosis day, it’s to acknowledge the magnitude of what happened, and to be told ‘don’t lose hope’. This mantra of not losing hope has changed and evolved across the years since the diagnosis. At first, it took the form of hoping to only get through the day.

With the months and years, it became a hope for a cure. Now, while I cautiously hope for a therapy, it’s become a hope of having a great life against the odds. Amazingly, the DMD diagnosis managed to change our lives for the better. It lit a fire under us to get a move on, to travel, to achieve our dreams, to live, to get up and take the kids to the park even when we were tired, to visit friends and look for new experiences.

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.