The start of the journey…

So, I’m a 33 year old mother of one, a wife and a secondary school teacher. I’m ambitious, love to laugh and fighting a constant battle between wanting to look like the 6th member of Girls Aloud, and needing carbohydrates and wine. Not gonna lie, the carbs and wine win 98% of the time.

In November, life was flipped upside down when our beautiful son was diagnosed with Friedreichs Ataxia. For those of you who aren’t aware of FA (I certainly wasn’t), Google (the fountain of all knowledge) describes it as:

‘A rare inherited disease that causes progressive nervous system damage and movement problems. It usually begins in childhood and leads to impaired muscle coordination (ataxia) that worsens over time.’

I call it a complete bitch. And thats putting it mildly.

After T’s diagnosis, things changed pretty rapidly. Gone were the annual dental check-ups and the occasional Doctors visit for a cough or a chest infection. In came the Paediatricians, Neurologists, Neurology Nurses, Occupational Therapists, Physiotherapists, Geneticists and Cardiologists (thats another story for another day). We have more ‘Ist’s’ in our life now than we can shake a stick at! Adapting to all of this has had its ups and its downs. To be fair, T’s coped with it better than anyone! That’s kids for you eh?

We have started at the very beginning of an incredibly long road.

My wonderful best friend suggested starting a blog to document our journey. And so here we are: ‘The Life of Riley’s’. This is our family, our journey and our experiences. An honest account of life with Friedreichs Ataxia.

I welcome you all along for the ride.

Good company in a journey makes the way seem shorter. — Izaak Walton

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3 thoughts on “The start of the journey…

  1. Been there done that. Our lad was diagnosed at 5. He’s now 14. All I can say is don’t let the stress win. Don’t give up, but don’t fight that hard you take yourself out of the game.

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  2. I have 2 daughters with FA one diagnosed at 14 she is 18 now the other at 15 she is 19 .
    The only thing thats gets you through is seeing how brave they are living with this . X

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  3. My two brothers had FA. Diagnosed in the mid sixties when there was limited awareness and support. They were both involved in the early days of founding a national support network and Paul edited the first magazine (FAG). Peter organised holidays for FA sufferers and I went on a few of those as a “pusher”.
    My brothers were incredible, in different ways. They both worked until their late forties, and were instrumental in helping agencies accept disability in the community and the workplace.
    Neither of them allowed their disability to define them and were fantastic role models. Peter became a counsellor and often went to meet newly diagnosed youngsters.
    I am so proud of their achievements in life- and miss them, but hope that their strength lives on in the great support work that is now much more evident in the 21st century. We have always prayed for a cure – and as with all inherited genetic conditions, we are getting ever closer.
    I look forward to following your “life of Riley’s” and wish you all well.
    Madeleine Quiney (was Cordwell)

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