As we walked into the neuro's office, he watched Michael very carefully, then asked me if he could record this meeting on video. Although I was doing all the talking the neuro practically ignored me, he was concentrating on Michael. He was watching his every move, concentrating liking an angler pulling in a fish, was this another catch?
He asked me questions about Michael's background. What was his family history? Has anyone else had similar problems? Has this happened before? He certainly knew something.
I had to ask him for a small private chat, things that I could not talk about in front of Michael. I was Michael's dad, but not biologically. Michael never knew this,what was the point of ever telling him, I looked after him from the age of one. I was his 'Dad.'
After giving him details of Michaels 'biological' father, we went for a walk. Michael was to get a blood test, they had put on the 'magic cream'. When we returned the neuro wanted another private chat. He had 'news' for me, Michael's father was on the HD register. He told me that he was sure that Michael had JHD and it was terminal. Michael would stop walking, talking, eating etc..... then he would die. This would all happen quickly.
My heart sank and my knees buckled. All I had wanted to know was why he fell so much. We had recently buried his mum, why us? Had we not been through enough? We were about to start living life again, the bad times were over, this can't be right.
On leaving the hospital Michael was his normal cheery self. "When I am older I am going to be a policeman," he said. My eyes filled with tears, I blamed it on the bright sun."Of course you are son, and a good one at that".
My next job was to tell our family. I found it hard to speak. The words 'Juvenile Huntington's disease' brought a tear to my eye; they still do.
When Michael was diagnosed officially (by blood test) it was as if he died there and then; we started mourning. I had told his sister Kirsty only a few weeks previously that her mother had died. I had to tell her that her brother would also die. I suppose it took about a year for our emotions to settle down. Maybe it was about time that we started living our lives instead of letting time go by.
Michael went to Disneyworld in Florida. He also flew to Paris and enjoyed the Euro equivalent.We went to Fife, Blackpool, Flamingo land, Arran and many other places.
Of all our adventures, going to see his beloved football team, the Glasgow Rangers, was top of our lists; he lived for them. I know that people have obsessions with things with HD, this was certainly Michael's. Every top, every sock, every thing about his life became Glasgow Rangers. He toured the stadium many times, but once was very special. I got to push him onto the pitch at Ibrox with the stadium music playing. He felt like a Rangers player for the day; I was very proud. On his 16th birthday, they invited him up to Ibrox to meet all the players, tour the stadium and watch the game. I was ill that day but got it all on video camera.
Michael built up a large amount of friends. He loved school and even up to the day he died, still managed to attend 2 days per week. The disease could never steal his soul, even though it took a lot of other things. Everywhere we went people wanted to talk to him; it could take a long time doing the shopping!
All our family and friends had the same focal point,laughter. No one ever spoke a serious word to Michael. Keeping a smile on his face was our job; his job was fighting with this horrible illness. JHD can throw you many problems,it is not an easy job,but one thing that shines through is that these kids are very special. Not just Michael, I have met many kids with JHD, they are all special. The problems that they have to face day to day are unbelievable, what the disease takes away from them is heartbreaking, but yet they fight on. They are the true heroes in this world. When Michael left us he left us better people, he taught us what friendship was, he made me a better man.
Sadly Michael passed away peacefully on the 12th of January. His pain is over but his legend lives on. We will never forget about him; he will always be a big part of our lives. Our hearts are sad but our faces are happy. He was the one putting the smile on our faces.