Sat in a dentists waiting room opposite a young Mum and her son, when archie - propionic acidemia family storiesthe dental nurse came in a called the Lady. As she stood up her son waved at me, his Mum looked at me and told me proudly “it’s his latest thing”  I immediately asked “How old is he?” She told me nine months.

I sat waiting for me turn and the only thought running through my head was, Archie is that age.

Why isn’t he waving?

This is what provoked us into seeking medical advice. We had appointment after appointment and were getting nowhere. We knew that things were not right he was too good, never crying not really paying attention, barely sitting let alone waving.

The only answer we got for a long time was “its delay” this is an official medical term in the UK for we haven’t got a clue!

After many months and continual pushing we finally got an answer…”Autism” or rather Autistic Spectrum Disorder. Again an official term that means “covering ours asses because we still haven’t got a clue”

Finally after 18 months and many consultations and Archie developing a curious game of in and out where he would put items in something and then remove them. It didn’t matter what he used from toys cars in a box to video tapes from the shelf. The game was the same. We went for a blood & urine test, the results from this takes a week. After a week we were called in again for the same thing. The following day I received a call from the Doctor telling me to bring Archie to the hospital immediately.  Now worried sick and fearing God only knows we went. This is when we were told of the PA. At first I didn’t believe there could be such a problem, after all protein is in just about everything surely?

The condition was explained along with the odds of having a child with this condition was given. A single diet sheet was provided, the powers that be went to great length to explain that the amount of protein he could have was worked out on a weight ratio. When I questioned this along with many other things it boiled down to “it was their best guess”

Not long after, Archie now being 30 months old he had an eye test. It was found that he needed pretty strong glasses as well. When I asked if it was part of the condition the reply was no it’s just more bad luck. To our amazement Archie never tried to remove them, therefore in my mind the only reason for this was for the first time in his short life he could actually see!

Now eight years on and too many scares and hospital visits to mention Archie is your average (albeit) small 10 year old who knows he is different. I know it gets him down on occasion and he knows he gets treated differently from other kids, not always for the better as it can lead to him being left out or ignored. He does his best and that’s good enough for me.