Sharing our story!

A few weeks ago we took part in some filming for the charity muscular dystrophy uk. The film was to be used to help their campaign in trying to get the treatment, spinraza, approved by nhs England. This is the treatment Zac has been receiving since June 2017. For us this treatment has been a miracle & for those who follow our journey you will know this medicine has enabled Zac to reach milestones we never thought possible; he can drive a power chair, he is attending nursery, he has kept well & he is gaining some muscle strength back!! Families in England are still being denied this treatment so we wanted to share our story to help the campaign. Our hope is that if even one person is helped by seeing our wee video then it’s worth sharing our story. For anyone out there who may be struggling with a diagnosis of any sort please know you are not alone. Sometimes life is unfair & difficult and throws curve balls but always hold on to hope – I hope our story shows that & I hope our story shows that miracles still happen. Below is the link to the little film we made.

Dear 16 year old me.

This year I will turn 32 years old; 16 years ago I was sitting exams and wondering what my future would look like. Life has changed so much since then and much of what I thought my life would look like has changed drastically. If I could go back and give the 16 year old me some advice to prepare for what my life is like now, here’s some of what I would say:


Dear 16 year old me,

I know right now you’re feeling the pressure of exams, you’re trying to choose what to study, you’re looking at university brochures thinking that this decision will determine your whole future. Well I want to tell you not to stress, your exam results won’t define you. You don’t have to worry about the future, you are going to find your purpose in life and you are going to learn more from everyday life than any university can teach you.

That boy you have a crush on right now is going to be the boy you marry. Love him with all your heart, be kind to him and learn to forgive quickly. That boy is going to become your best friend, he will be your rock and you will become a strong team. Together you are going to face many challenges, there will be hard times and you will need each other. Keep laughing together and don’t forget who the two of you are.

You think its important right now to “fit in”, you care a lot about what people think and you worry about people judging you. Please don’t waste time worrying about these things – learn that it’s okay to be different, your whole life is going to become different from the normal and you’ll need to learn to deal with stares, questions and judgements. Keep your head held high and smile through it all.

The words autism and spinal muscular atrophy are words that will sound scary when you first hear them but I want you to know it’s okay to be scared, it will push you out of your comfort zone and help you become the person you were designed to be. Listen when I say you are stronger than you think, you are braver than you know and you are going to be able to deal with everything life throws at you.

There will be times when you are pushed to your limits, times when you feel like running away but stay strong – you can do this. Keep your sense of humour, you’re going to need it, remember to laugh often. Hold onto that faith you have now – you are going to see miracles. On the difficult days remember bedtime will come and a new day will start, on the good days be thankful and content.

There’s one last thing – Be kind to yourself, take time out for you and don’t be too hard on yourself. Remember who you are and remember that girl is pretty awesome. Follow your heart always – you’ve got this!

Love the 32 year old you x