Something wasn't right
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 ALD started in September 2002, he was five 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 superheroes. I just remember him looking up at me and not focusing properly, his right eye going to the side.
I phoned the doctors and they got me in the next day. He said there was nothing to worry about and referred me for an eye test. I was so relieved, and Joe seemed fine and happy, so we carried on with everyday life as normal.
It didn't seem long after that I noticed Joe would sit in a daze and not hear me shout him, then snap out of it and be okay again. I put it down to him being tired. Things got worse, and school would phone me saying he didn't feel well. He gradually became a different child — he didn't understand simple instructions, and would just look at me and stare. Over the next couple of months he became very obsessed with routine, and would have a tantrum if things weren't exactly right, which wasn't like him at all.
School became very concerned and asked me to come in — his reading and writing had gone well below average, and he'd been found wandering around the playground, frightened, not knowing where he was. My stomach just churned.
Wonderful Christmas
We had a wonderful Christmas — probably the best one we've had. Lots of presents, my mum and dad staying, Joe playing all day. We videoed everything, from me putting his presents under the tree to him going to bed. His little face on Christmas morning was magical, and for that day we forgot all the worries.
Grimsby Hospital
At last his appointment arrived. We sat down to see the doctor, and instantly she looked worried. She excused herself, and I just sat there trying to put a smile on for Joe's sake while feeling scared. Joe was rushed for an MRI scan. The consultant showed me the scan — two white masses on his brain. I asked if it was a tumour. He said no, and for a second I felt relief — very short-lived, because that's when I heard the word for the first time: Adrenoleukodystrophy.
We came home the next day and everything felt like a dream, like the whole world was carrying on as normal while my life was being torn apart.
An Awful Disease
I was the one who had passed this disease on to my son. I was devastated, and felt so guilty — I just kept thinking I wished it was me and not Joe. They told me my beautiful boy would die without a bone marrow transplant, and even with one, because he was already showing signs of brain damage, he might not make it through anyway.
Through it all, Joe stayed so happy and never moaned. He inspired me to stay strong, because he needed his mummy, and I wasn't going to let him down. We always stayed so close through everything.
Sheffield Children's Hospital
A couple of days later we went to Sheffield Children's Hospital, where we were told everything about ALD. Joe would need Lorenzo's oil to lower his very long chain fatty acids, and a very low-fat diet ready for his bone marrow transplant. That's when I met Linda, his nurse in Grimsby, who became a treasured friend, and Carol, a play specialist who could always make him smile through the needles.
A tube had to be put in his chest ready for his chemo and drugs — Joe picked all different coloured "wiggly bags," as he called them, and thought it was great. At home things were getting difficult; I had to put the stair gates back up and watch him constantly as he kept falling. A few weeks later, watching television together, he got up to look for me — he had no idea I was sat right there with him, and he panicked. That's when I realised he was losing his sight. Sheffield confirmed it: even with the transplant, Joe would be blind within a year.