We went to Sheffield Children’s hospital a couple of days later and that’s when we were told everything about ALD, that 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.
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.