What is rare?

We are all our own rare breeds aren’t we? We all have our own little quirks, habits, rituals, behaviour, manners ….. these can be annoying or endearing – it all depends who you are and who you affect with them. The majority of people choose to behave in the way they do – learned or unlearned behaviour.

To be rare, but with no choice, is another factor all together.

William is rare. He has a rare condition. He has Duchenne. He isn’t like any of his peers, nor his sister. The blindingly obvious fact is that this rare condition affects every muscle in his body; his mind and his soul. He didn’t choose to have these habits, this behaviour, this crap body that doesn’t function.

William is rare due to duchenne, this makes his life rare compared to anyone else we know.

His rareness means he takes lots of medication day and night – steroids, stomach protection, D3, heart medication, fish oil….

His rareness means he has daily physio TWICE a day.

His rareness means he cannot wear ‘normal shoes’ as he has heel cups.

His rareness means he wears splits every night to bed.

His rareness means he cannot regulate his body temperature.

His rareness means he cannot run, skip or jump.

His rareness means he can’t play tag in the playground with his friends.

His rareness means he cannot ride a normal bike nor a scooter.

His rareness means he can never go to a trampoline park or bouncy castle.

His rareness means he learns in a totally different way.

His rareness means his muscles ache.

His rareness means he gets upset, uncontrollably and cannot understand why.

His rareness means mummy and daddy have to answer some very tough ‘why’ questions.

His rareness means he must use a wheelchair.

His rareness mean he will stop walking, stop feeding himself and eventually stop being.

As a family we hate his ‘rareness’, we hate Duchenne and we will do anything to raise awareness of it and hope to find a cure.

My rare little boy may have the most hideous of conditions, but behind the rareness is the most wonderful smile, character and human being I am yet to meet in my life.

We love you William, we will always fight for you. 💙👊🏻💙

Please share this post, share this picture and raise awareness of Duchenne on 29th February – Rare Disease Day 2020.

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