The reality of Duchenne

Today has been an odd one. It’s the first time I’ve been on my own for quite some time. After receiving the official diagnosis, I wanted to get things organised in terms of DLA, blue badge and any other help Hugo is entitled to. After calling the DLA office, the reality of Hugo’s diagnosis kicked in. Suddenly, everything became real. My son is disabled. Never in my 6 years of being a mother did I ever imagine I would be claiming disability benefits for one of my children. It’s any parents worst nightmare. 

Feeling proactive, I then decided to ring the ‘wish upon a star’ charity. The lady on the other end of the phone was amazing. She listened to me waffling on and getting upset about the whole situation. It turns out she has a daughter with cerebral palsy so she really understood how I was feeling. Hugo meets the criteria to apply for a ‘wish’ and it would seem he may be eligible for a few extra ‘treats’. The charity have a private villa in Florida and can organise a family holiday, visiting Disneyworld, Universal Studios, Seaworld and the NASA space station. They fly you out first class and the villa has its own private pool. It sounds absolutely incredible. As amazing as it would be, I was still sat there thinking ‘I would do anything to not have to apply for this right now’. It really is the trip of a lifetime but I would rather have my child’s health (and life) back and settle for a caravan in Skeggy. 

Following that phone call, I had floods of tears, by myself in the living room. I just couldn’t deal with the thought of having to ring all these organisations, fill in endless forms and repeatedly explain Hugo’s condition when all I want to do is pretend he doesn’t have Duchenne. 

The reality of his condition is also becoming more and more serious. He had his physiotherapist visit at home this afternoon. He already needs leg splints, specialist boots, referrals to numerous different services and home adaptations. Two weeks ago, Hugo was absolutely fine, now I am faced with all of this. I jut want to rewind to two weeks ago and pause our life in that moment for a bit longer…. 


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