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.
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.
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!
I was the one that had passed this awful disease on to my son! I was devastated and felt so guilty! I just kept thinking I wish it was me that had it and not Joe. I remember them saying that my beautiful son would die without a bone marrow transplant and even with that, because he was already showing signs of brain damage, he might not make it through anyway. The kind nurse could see I was ready to break down so she made me a coffee and left me in a room on my own, I felt sick and petrified but I knew we didn’t have a choice so they started looking for a donor and all the tests were done.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
We went to sheffield children’s hospital a couple of days later and that’s when we were told everything about ALD.
The consultants told me Joe would need to go on Lorenzo’s oil which would lower his very long chain fatty acids and go on a very low fat diet ready for his Bone Marrow transplant. That’s when I met Linda his nurse in Grimsby she came to take bloods every week, she became a very treasured friend, Carol a play specialist would take his mind off the needles and make him smile. Joe had so many tests and bloods taken we felt like we spent more time going to and from Sheffield Hospital than at home, but I new they were taking good care of my Joe. Eventually a tube had to be put in his chest ready for his chemo and drugs, Joe picked all different coloured wiggly bags (as they called them ) he thought it was great and he got used it very quickly. At home things were getting really difficult I had to put stair gates back up and make sure I was watching him all the time as he was falling over everything and he would get so frustrated he just couldn’t understand what was happening. A few weeks later we was sat watching television together and he started to shout me and got up to look for me, he had know idea I was sat with him and he panicked ! That really shocked me and I realised then that he was losing his sight, I told Sheffield and they did a thorough eye test, the news wasn’t good ( as usual ) they said even with the transplant Joe would be blind within a year. They fitted him with hearing aids but it just magnified his confusion and he hated them in, I could always understand Joe as his speech was very slurred now and he could understand me which was lovely.
After a few weeks just before Joe lost most of his sight, I was having a tearful day and went to sit on the stairs so he wouldn’t see me cry when he came through and saw me, I just said mummy was being silly and that I loved him very much. He went in the toilet and got me a tissue and wiped my eyes and sat down with me, it was as if I had got Joe back for a few minutes and he knew exactly what he was doing and saying
I will never forget what he said, he held my hand and told me that he would always be with me and that he loved me "more than the moon and stars in the sky and the planets in space “. We said that to each other everyday, it was as if he knew after that day he might not be able to say it. Days went by and more hospital visits and tests but Joe was getting rapidly worse. He loved putting his James Bond DVDs in order and he would spend ages taking them out the box and putting them back in again, one day I was in the kitchen and he screamed out that he could hardly see anything, I just held him and told him everything would be ok (knowing it wouldn’t be) I was devastated I just felt so hopeless for him.
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