What a week it has been! The emotions I’ve felt this week has been unbelievable. Alex took part in a film on Monday, I can’t tell you anything now but what I can say is that he was incredible and everyone on set fell in love with him. He’s an absolute super-star, full of determination I love him so much. Then followed nervousness that I had put Alex forward had I made the right decision. Yes of course!
Thursday, saw us win the Leicester Mercury Business Awards Not-for-Profit category with that was happiness and joy, I was proud of what we have achieved so far and this has fired me up even more to believe in ourselves and break down any barriers and go for it! I have a real sense of hope, especially as Translarna the first ever drug to treat the underlining effects of Duchenne in England only came about last week albeit it will only treat a small proportion of boys, but yet we are making progress. I truly believe we have a shot of saving our sons but I know we have to find it within ourselves to go the extra million mile and fight like we’ve never fought before!
Today, is the day that we found out that Alex had Duchenne – 6 years ago to the day and on this day. What a journey those 6 years have been, from finding out about Alex, my mum losing her battle to cancer at just 56 years old and just 10 weeks after finding out about Alex’s diagnosis, going through 4 rounds of IVF to get my beautiful daughter Isla so we didn’t pass on the gene to her, launching a charity and raising over £360k for reseach. The people we have met on this journey and the new friends we now have as a result is unbelievable! I am sat here feeling a whole mixture of feelings – hope, determination, sadness but ultimately proud of the family we have – we’re a steely lot! Would I have changed anything over those last years if I had to do things differently – no absolutely not!!