Where it all began…

How did my interest blossom?

My last post about How to Find an Idea is all very well and good, but I was asked today, via comments, on how I chose undiagnosed genetic conditions as a topic for my documentary.It took a lot of thinking to write a reply. It’s hard now to separate my thoughts and feelings in April from my thoughts and feelings on the subject now. I’ve learnt so much that it’s hard to separate the two.I decided it was worth repeating here, in my blog, as well as my reply to areyoukiddingney.

The topic was something I stumbled upon. Last year I graduated with a BSc in Molecular Cell Biology so I often Google “genetics” to keep myself informed and find new research that interests me. In April, my Google results led me to the SWAN UK blog, and in turn, to other blogs by parents with undiagnosed children.
Some of the blogs invoked such an emotional response from me. One minute I was sad, then furious at the injustices being suffered by lack of services, and then each and every blog would leave me with a smile, as the parents finished by saying how their child had done something new, hitting a milestone that they’d never thought they’d reach, or just that despite the lack of support- they were so happy they had a beautiful SWAN, so they’d just keep fighting and hope for the best.
So, that got me interested.

I then started looking into the theory. I researched into the studies being undertaken- with the two mains ones being GOLD and DDD. I rang NHS genetics centres to find out how it all works behind the scenes- what equipment do they use? Why are children undiagnosed? Where are parents sent after they’ve run out of answers? And I was surprised at what I found. The intricacy of the science fascinated me- and I wanted to explain it to everyone else.

And also, I wanted my documentary be to worth something. I wanted it to have value and I wanted to enjoy doing it. I believed in those families from the first time I contacted SWAN. In fact, my first phone call to the parents lasted over an hour! And it was so natural!

PLUS, I’ve always worked with children. Whether that be paid or voluntary, I’ve worked in a crèche, hosted kids parties, been a rainbow and brownie leader, worked in summer schools and now I’m a Heart Angel, I give freebies and face paint aswell! I remember working with a child in a crèche that had disabilities. The family used to come in on the evening opening hours- you could pretty much guarantee you would have the place to yourself then. He would roll his head, smack himself and make the strangest noises. It made people stare as they walked through reception, and yet in the crèche I would look forward to them coming in- the same time on the same day every week. Him and his father, while his mother went to the gym. Because he wasn’t “normal”. That meant that we could have more fun interacting with him, showing him the colourful balls in the ball pit and playing with the toys he’d brought with him- light up, colourful and very good fun. I suppose in hindsight, since I’ve done the documentary, it’s the feeling that you have with your children every day.

I enjoyed meeting all of the children in this documentary. I loved meeting their families and, in some cases, their Grannies and Aunties too! And I hope to do more in future to help. Not just with undiagnosed children now, but I am starting to understand about different types of disabilities which I had never thought twice about before, so maybe in future, there will be some sort of career for me to work in science, media and with disabilities… Any ideas would be appreciated!

Useful document: What Happens in a Genetics Laboratory via NHS Choices (PDF)