Before finding out about Hugo, I’d never heard of Duchenne. But then it suddenly seemed to be everywhere. I’d seen Alex Smith on This Morning talking about his upcoming show. I couldn’t believe that I was hearing about the condition that Hugo had just been diagnosed with, yet less than two weeks ago I’d never seen or heard anything about it.
I googled Alex Smith and had a good read about his story and little Harrison. It was scarily similar. I mentioned the show to Danny but he was dead against watching it, I think it was too soon for him. I tried to convince him to watch it saying ‘it’s not about the condition or how it affects Harrison, it’s about him doing the challenge’. How wrong was I! Danny didn’t watch it, I gave it a go. After 10 minutes I was in floods of tears. I had to pause it at least 3 times to grab the tissues.
Whilst it was really difficult to watch, it also showed me that people can get through this horrendous diagnosis and in time you can deal with it better. And to see how happy and resilient Harrison was really made me feel more positive. The family are truly inspirational.
Since watching the show, I’ve managed to get in touch with Alex directly and the support he has shown towards us so far is amazing. I feel truly blessed to have found that support network. As much as our friends and family are supporting us in every single way possible, it’s difficult for them to truly understand exactly how we feel. To be in contact with families that have been through this is such a massive help.