Angelman to the rescue!

Reece J
26th June 2014

Angelman
 

Just before Christmas of 2013, my twin brother, Theo, was finally, after nearly 18 years, diagnosed with Angelman Syndrome, after being told he had Cerebral Palsy when he was younger.

Angelman Syndrome is a little known genetic disorder, which affects 1 in 20,000 - 25,000 people. It affects Chromosome 15 on the maternal side.

One of the symptoms of Angelman Syndrome is little or no speech and Theo is unable to speak, but makes lots of sounds and does a lot of hand and facial gestures, and uses Makaton to communicate.

Theo and Reece with their parents, standing in front of a Christmas tree
Theo and Reece with their parents

However, the final diagnosis came about purely by chance. Theo was struggling with his legs and his walking, so we sent him to a specialist to find out why and we got told more than what we bargained for. The specialist checked him over and she told us that she suspected Theo had Angelman Syndrome.

We did some research into the condition and we found that Theo had all but one symptom associated with Angelman Syndrome. The specialist ran some DNA tests and the results came back 'positive' that he had Angelman Syndrome.

The comic strip
The comic strip shows the quiet superhero known as Angelman catching a bank robber. After doing this, the local newspapers arrive and take his pictures. He doesn't speak, only smiles. And once again, the small town of Caelum (Latin for heaven) is safe again.

The specialist also did some tests on my mum and it turns out that it was just a one-off, and will not affect any of my cousin's children or my children. This was a relief.

After the diagnosis, I decided to dedicate an A-Level art project to Angelman Syndrome: I decided to turn Angelman into a superhero and make a comic strip to outline some of the symptoms. I also made a leaflet to explain what the condition was and what all the symptoms are.

After I completed the project, I decided to take it further and create an awareness campaign to make the condition much more well known. My goal is to make it as well known as cancer, Down's syndrome, and autism.

I have created a Facebook page, a Twitter page and also got an article featured on the front and back page of my local newspaper. I'm now hoping to get my awareness campaign featured on national newspapers and also on television.

At home

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