We were told Hugo’s DNA results would be with us by the 28th June. I thought we still had a week left. I went to my mums in Rasen today for lunch with my mum and sister. We watched a bit of My Iron Man Dad so my mum could see what it was like. I had a few tears again. For some reason, I got a strong urge to ring the hospital as I just had a feeling that something had happened.
I spoke to the consultants secretary who said it was odd that I had called as she’d just that minute opened his DNA results. My heart sank. I’d spent 2 weeks desperately wanting these results but suddenly I didn’t want to know, and I wanted those 3 weeks back again. She couldn’t give me any details over the phone but said she’d get the consultant to ring. I broke down after that phone call, luckily my mum and sister were on hand to pull me through.
The next 5 hours were a very long 5 hours. By 5pm the consultant hadn’t rang, so I called him. He said he would like to see us in clinic tomorrow at 1pm. So I was expecting a sleepless night waiting for results.
7pm. I was settling the boys for bed and could hear my phone ringing numerous times. By the time I got to the phone, I had 3 missed calls from the consultant. My heart sank again as I knew it would be bad news. Danny was out at the shop and I was alone when I called back. It was exactly what we knew it would be but yet I still wasn’t ready. I hadn’t wanted to believe it or accept it. The consultant apologised and informed me that unfortunately the results are not good news, Hugo does have Duchenne.
I completely collapsed in a heap of tears on the bathroom floor when I got off the phone. Danny came back to find me in an absolute state. It was all real now. He has Duchenne. I no longer have any hope that this is all a mistake or he has a milder form of dystrophy. Our gorgeous Hugo has the worst kind of muscular dystrophy there is. I have no choice but to accept it.
I knew it would hit me massively once we had those DNA results and now I genuinely don’t know where I am going to find the strength to continue. I wish we still had until the 28th 😢