Almost 5 years of Down Syndrome Advocacy

I have been thinking about how long I have been a Down Syndrome advocate. Should  say I have been one since Rory was born or did I start becoming one when we found out Rory may have Down Syndrome?

Rory was born in January 2015 and our Mum had a one in five chance of Rory having Down Syndrome. I then started this blog to talk about our life with Rory and my life as a first time mum to Elsa in September 2016. Over the last 3 years since I started blogging I have written lot of blog posts about being a sibling as well as blog post to help families in general with Down Syndrome. Obviously, I was a Down Syndrome advocate before I started blogging, it was just on a smaller scale.

Rory turns 5 in January. His birthday not just marks the day he was born but also the day that our family changed. I knew somethings about Down Syndrome before we were given the one in five chance during Mum’s pregnancy. I studied nursing in college and we had learnt all about it then. But when Rory was born, it still felt as if we were all thrown in at the deep end. The weeks before Rory was born, we did a bit of light research. Some people call it ‘getting prepared’ but nothing could prepare us for the mini hurricane that is Rory.

I don’t normally blow my own trumpet when it comes to achievements. It isn’t something I usually do. Although when it comes to DS advocacy, I am some what proud of myself. Next year (2020) will hopefully be the 3rd year of lighting up the local town hall for World Down Syndrome Day. It is an event that has become a big deal for us, it is also Mum’s birthday too so a double reason to celebrate the 21st March.  I now have 3 children, who I hope will be amazing Down Syndrome advocates too. It is partly my job as their mum to teach them all about Down Syndrome and to show them how amazing Rory really is.

A big part of my blog and the fact that I have won  awards is due to Down Syndrome advocacy too. My first award was the Mencap Journalism Awards 2017  for something I written about Rory and since then I have won 4 awards and this year I am once again a finalised in the Parent and Baby show awards.

Being an advocate means an awful lot to me and I feel like I am using my voice, experience and platform to help others. Sometimes just seeing someone else similar to you can help so much and I hope that siblings and families will find my blog posts or social media and realise that there is a light at the end of the tunnel. Things will get better and life doesn’t end with a DS diagnosis. A new life starts that is filled with love and brand new adventures.


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