Today was Hugo’s echocardiogram, to see how his heart currently is. I wasn’t particularly worried about this appointment as I am quite confident that his heart is fine at the moment. Obviously we know there is a slight weakness already but that’s to be expected with his condition. 

He was such a little superstar, he had a few moments where he was fidgeting but other than that he was amazing! I didn’t even notice until the end of the appointment that we were in the same room as when we were first told that he has Duchenne. At the end of the appointment, the sonographer turned the lights back on and it was only then that I realised where we were. 

Hugo went into a corner where there was a child’s table with some toys and started playing with the exact same toy that he was playing with when our consultant broke the news. Within seconds, the blood drained to my feet and I felt really lightheaded. Every little detail of diagnosis day flooded my head and everything was so fresh, I literally felt like I was in that moment again. It was a horrible feeling. It’s the first time that something has triggered me to remember diagnosis day so vividly. Every single detail emerged in my mind exactly as it happened. I felt stupid at first for becoming so emotional just because I was stood in the same room. Then I remembered that it has only been 10 weeks since that day. As much as I try to put on a brave face and deal with this situation, it is still so raw and painful. It wasn’t stupid to feel that way over a room, the news I recieved in that room permanently changed my life.
After Hugo’s appointment, I then discovered that Ricky Tsang, a Duchenne warrior of 35 years old, had finally admitted defeat to this cruel condition. It hit home again that Duchenne will eventually take my Hugo, when he isnt even as old as I am now. There is hope that he could fight it for as long as Ricky, but he really is an exception. He is an inspiration and I hope Hugo grows up with the same determination, resilience and strength as Ricky, to fight this condition for as long as he possibly can. The Duchenne community has lost a superstar today. 

Just to finish my emotional day off, I’ve just had to tuck Hugo into bed wearing a lung function monitor to check his oxygen levels. Another reminder of Duchenne. There is simply no escaping it. But then I remind myself that all these things are to make sure Hugo lives for as long as he possibly can… If Ricky Tsang can do it, Hugo Hart certainly can. Here’s to another 30 years. 


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