My boy is amazing! 

Hugo has been an absolute superstar lately. At only 4 years old, he has had to deal with so much already. His autism prevents him from fully understanding whats happening to his little body. He isn’t aware that instead of growing big and strong, his body is growing weaker by the day. 
Hugo started wearing his splints on Thursday. This is a boy who hates wearing trousers, he would happily spend all day long in just his pants. The thought of getting him to wear splints all through the night filled me with dread. I never in a million years thought he’d actually do it. But, 5 nights in and he’s not once attempted to take off his special ‘puppy bedtime boots’. In fact, I think he quite likes them.
The last two mornings, he has woken up and told me that his ‘legs are tired’. At first, a panic hit me that he could be deteriorating quicker, the average age for loss of mobility in Duchenne is 8-10 years old, however it can happen at anytime. Then I realised that it will be the splints. They hold his toes straight up at a 90 degree angle to his legs. Try sitting with your toes pointing up in that position, after a couple of minutes you can really feel the pull behind your knee. Poor Hugo has to sleep like this every night. It’s no wonder his legs are ‘tired’ in the mornings. 
But, he is soldiering on without a single complaint. We even get a thumbs up at bedtime when he gets to wear his ‘puppy bedtime boots’. What a legend! I couldn’t be more proud of Hugo. 


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