Acute Disseminated Encephalomyelitis (ADEM) Support Group



It was that Saturday morning which changed my life forever. Feeling relieved that the weekend has arrived, I was excited... I was wrong. I remember waking up and feeling weak in my legs.

I got up quickly (hoping to get the last of the Milo cereal), but as I attempted to get to the kitchen… I fell. This wasn’t just any type of fall; it was a collapsing type of fall. At the time I didn’t really care, I just wanted that cereal. I got up and kept going.

As I arrived into the kitchen, I noticed my brother munching on the last of the Milo cereal. Defeated, I grabbed a bowl, some milk and a box of Sultana Bran, and as I was pouring the milk in… I collapsed again.

This time I couldn’t get up, it was like my legs decided they wanted to go on holiday and didn’t tell me. So there I was trying to get up, helpless, I felt like all my abilities were all taken away from me, at this point my brother starts laughing as he helps me up.

“Did you trip over air?” he giggled.

“I-I just fell, I don’t know what’s wrong with my legs.”

I tell my brother to get mum. Then my mum tells me she’s taking me to the hospital. So off we go, in an in-closed car for 40mins to PMH (Princess Margret Hospital). When we arrived at the hospital, I was rushed into the ‘Emergency Ward’, where I saw children that looked like they needed more help than me. For some reason I was seen before anyone else was.

I felt bad for the other kids but, I was starting to worry about the tests they would do to me. I was given a wheelchair, and I was pushed into the ‘X-ray room’. In the room there was a massive white pod thing, some sort of X-ray machine. Apparently it can see all bones and fluids.

I was to lie down and relax (that was the last thing I was going to do). As I got into the machine, a screen came on; it started playing ‘The Simpsons’. This is when I lost track of time. As I got out the machine, there was a tall man in a silver suit, he was skinny and scary looking. He was my new doctor, he told me to go to ‘Ward 8 - Room 16’ (my new room).

On the way, I was looking at all my new ‘neighbours’. These people were suffering some pretty bad illnesses; this one kid had a peanut allergy, so bad it made his whole body swell up.

When I arrived at my room, there were two other kids inside (one room holds 4 people). I introduced myself when everyone left, There was a boy (10) who broke his leg, and a girl (15). One day had passed. When I woke up I noticed I had a ‘Drip’ in my arm while I was asleep (a ‘Drip’ is supposed to give my body medicine by having a constant tap on me). Then my doctor came in.

“Is all this necessary?” I asked.

He told me that I have a disease called ‘A.D.E.M.’ (Acute Disseminated Encephalomyelitis), a fluid on my brain and spine which had paralysed my legs. If I didn’t come to the hospital when I did, I would have been in a wheel chair for the rest of my life. The girl in my room had a similar disease, except her one is harder to treat because it keeps coming back (‘M.D.E.M.’: Multiphasic Disseminated Encephalomyelitis).

As the days went, I grew a bond to the hospital, for the first time I felt like I belonged somewhere. Or maybe it was all the attention? The hospital food was actually really good, every evening I would receive a blue sheet, and I can order what I want from it.

I spent 3 months in that hospital, in 2009. Best wishes to the girl in my ward, hope she’s alright now. I can’t imagine a world without my legs.

I’m now 16. I just want to live life to its full potential, after my random incident.

I hope others can be cured just like I did.