My Story - Page One

I have written what happened to me & my little boy when he was diagnosed with ALD. It was the worst 8 months of my life but I wanted to share my experience's with everybody. The doctors told me he would have had it since he was two & he had the worst form of ALD. They also said they have learnt from Joe to help in their battle against this disease.



It had always been just me and him since he was a baby, he wasn’t just my son he was my best friend who always made me smile even when things got bad. Our Journey with A L D Started in September 2002, he was 5 years old. He was having his bath after school and I was sat talking to him while he was playing with his power rangers!! He loved all action figures and super heroes, I just remember him looking up at me and not focusing properly and his right eye was going to the side. I was a bit concerned but not worried as his school friend had a lazy eye and his was being treated with glasses.

I phoned the doctors and they got me in the next day, he said there was nothing to worry about and he would refer me to the hospital for an eye test. I was so relieved and Joe seemed fine and happy so we carried on with everyday life as normal.

Me and Joe

It didn’t seem long after that I noticed Joe would sit in a daze and not hear me shout him, but then would snap out of it and be ok again, so I put it down to just being tired. Things got worse and school would phone me saying he didn’t feel well and I once again took him to the doctors!! After him looking at me as if I was a overbearing mum and a hypochondriac, he just said Joe had glue ear and he was just being naughty, which I new was wrong and I wasn’t happy at all but went away with some ear drops! He gradually became a different child, he didn’t understand simple instructions like go and get your drink, and he would look at me gone out and just stare. Again I put it down to him not hearing me properly and it making him confused. I went back to the doctors a couple of weeks later and he made me feel so uncomfortable and just said to wait for the referral from the hospital and to stop worrying!

Over the next couple of months Joe became very obsessed with routine, I would have to put on his clothes in a certain order and have his food so it wasn’t touching on his plate, or he would have a tantrum (which was not like him) and I couldn’t get him to go out or eat. Then he became very clumsy falling over everything but again I put it down to his eye. I didn’t want to go to the doctors again and his appointment had come through for January so we were just looking forward to Christmas.

School became very concerned and asked me to go and see them as his reading and writing were going well below average and up until then he had been doing so well with everything and always got 10/10 in spelling. When I got there they said Joe had been found wondering around the playground and didn’t know were he was and was frightened, my stomach just churned and I gave him a big cuddle and told him mummy would make him better and not to worry, by then I was getting worried myself and just wanted some answers.

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