5 things about me on World Rare Genes Day

Today is #WorldRareGenesDay and thanks to my esteemed friends Sam Mildon, Tori Elliott and Lauren West (plus a few others); I am to share 5 things you don’t know about me.

Running a blog means I’ve spilled the beans already, so here’s some general thoughts for everyone on this important awareness raising day:

1) I have Spinal Muscular Atrophy type 2. This means I have never walked unaided, haven’t walked aided since 10 years old, have to be moved in the night, need assistance to go to the loo & shower, and I’ll stop before the violin starts…

2) I grew up with an amazing family (especially my younger angel sister Claire), had rich friendships, and got GCSEs/A-Levels/Bachelor/Masters qualifications. Bit of a geek!

3) Transitioning to adulthood is bloody hard. However everyone has the right to live independently and enjoy family for the moments together, and not only care support. Going to university, being cared for by others, learning to drive and leaving home was so hard – but totally worth it!

4) As a result I lived/worked in London, was a bit of a player in my early 20s (sorry mum), travelled lots of the world and met great people.

I’m now self employed, engaged to a beautiful and awesome young lady, and continue to love every minute of my existence on earth.

We’re only here once!

5) Rare genetic conditions can be pants. Even last year I dealt with a deterioration in my condition. Here’s my positive parting advice:

– If you’re an individual with such a condition, listen to your body, and nobody else. Enjoy every single moment and live by your own rules.

– If you’re untouched by such a condition; never judge people, treat everyone equally, understand these conditions, but never pity them, encourage government/media/corporate investment in removing the social barriers in our way, and simply help normalise disability.

Best wishes


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