It all started in September 2013, a month before he was about to turn three. It was just a regular visit to his pediac and we showed our concerns about his gross motor skills. We are more concerned as he was an early baby, so we always thought he is taking more time than other kids. The doctor said that’s fine , he will start jumping and just when we started to show other concerns, he asked for a blood test for cpk. What’s that? Well ok, it wouldn’t harm.
It was all done and few days later we checked the reports online and the reports looked weird! The numbers were just weird. Anyway, we didn’t know anything about it. We went there, he told us that my little boy might have Duchenne!? That’s when we first heard the word Duchenne. 10th September 2013, Tuesday – the time stopped for us. I didn’t know what he was talking about but I just wanted ryo to be fine. He used few words like – muscle weakness, difficulty in walking, wheelchair – what the hell was he talking about. We thought he is not making sense and there is nothing like that.
We were referred to another hospital which deals with Muscular dystrophy. We picked up our son from preschool and headed there. My husband was driving and I did what I always do- I searched for Duchenne online. I was devastated, I had no strength to tell my husband what I was reading. There is no cure and he would not be able to walk when he reach his teens!! What nonsense was I reading – I ignored! And then I read it’s 100% fatal!
God – why him? Why us? I just kept looking at him…
Almost a month later, exactly a day before his third birthday, his diagnosis was confirmed. Yes, a new chapter of our life started and it was Duchenne.