We had a wonderful Christmas probably the best one we have had, lots of presents and my mum and dad stayed at our house, we went to my sisters house for Christmas dinner and Joe played all day! we videoed everything from me getting up to put all 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.
After Christmas things got harder and harder and he was finding everyday tasks difficult so I told them to keep an extra eye on him at school and his teacher was amazing, she would go out in the playground and hold his hand and keep him safe and all his friends would look after him . I just wanted to keep him at home but I knew he needed routine.
At last his appointment at the hospital arrived, I was so relieved hoping we would get to the bottom of it all and make Joe better at last. We sat down to see the doctor and instantly she looked worried, she excused herself out of the room and I just sat there trying to put a smile on my face for Joes sake but feeling scared. She came back in the room and sat down with a sympathetic look on her face and told me Joe was being rushed down to have an MRI scan as she was so worried about him. I just sat there numb just wanting to cry but couldn’t as Joe was watching me and he was scared to, so I just gave him a cuddle and waited. He was so brave, the hour he was having his scan I just sat in the café and drank coffee and everything went through my mind, should I have done something sooner, is it my fault ? I just wanted to see Joe and find out the results but I was so frightened, all I kept thinking was brain tumour or cancer!!!
The Consultant finally came to see us and showed me the scan, all I could see was two white masses on his brain and I felt sick. I said it’s a tumour isn’t it? He said no so for a second I had relief, very short lived though that’s when I heard the word for the first time ADRENOLEUKODYSTROPHY , I just sat there thinking I had never heard of it but as long as it wasn’t cancer we would have a chance. We came home the next day and everything felt like a dream, like the whole world was carrying on as normal but my life was being torn apart!