This week at Excitim HQ, we were moved by the Star Wars video that’s helping to raise awareness of Angelman Syndrome. It’s a step in the right direction as Angelman Syndrome is not as well known as other medical conditions that many come into contact with.
I’ll admit, I didn’t know of it myself until in 2014, I was asked to exhibit at Assert’s annual conference. Assert support children and families of children with the condition. Read more about the Angelman Syndrome conference
We ran an iClick and iControl demonstration of some new iPad tech and had a bunch of toys with us including an inflatable, remote controlled, Despicable Me Minion for the Angels to play with. It’s about 60 cm tall, soft and stands back up when it’s pushed over in the excitement.
We meet lots of children with Angelman Syndrome whilst exhibiting and it’s always a pleasure. They are friendly natured and will give you a hug regardless! Although, it can prove a challenge to stay alert as Angels don’t usually have a sense of personal belonging so when there’s attractive goodies on the table, they are the first to claim them!
I’m always struck at how happy and care-free these wonderful children are despite their condition. We can certainly say ‘the force is strong within this one!’ about many of the Angels we meet.
The following is a little fact finder for those not well versed with Angelman Syndrome:
Angelman Syndrome Characteristics
It’s usually at around 6-12 months a child will start to show symptoms of Angelman Syndrome usually in the form of late development such as not being able to sit on their own.
Children will go on to not talk or perhaps only to be able to say a few words. Instead they’ll communicate using gestures.
Other symptoms include:
- Difficulty to walk, balance and co-ordinate
- Laughing and smiling without stimuli
- Flapping hands
- Fits and seizures
- Some children of two years old will have a small flat head at the back
- Crossed eyes
- Walking with their arms in the air
Is Angelman Syndrome life threatening?
A child with this condition is likely to live a full life although may have additional complications such as seizures that mean they need continuous support. There’s so much more to learn about this condition.
Professionals around the world are working hard to understand the causes and possible treatments for children affected by it. Much of the research is reviewed and presented at the Assert Conference.
How’s is Angelman Syndrome caused?
We know it’s a genetic issue and is caused when UBE3A (the Angelman gene) is either absent or malfunctions.
Please take a look at the ASSERT website to find out about the fantastic and much needed support they offer.