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