My name is Kevin, I’m 17 years old and this is my story:

My mother got this disease when I was four, and contracted the first symptoms: these involuntary jerky movements which gradually forced her to reply on constant help for everyday tasks such as getting a drink of water and other things.

I have to say that at my age, I didn’t understand what was happening, and like when most of the time, children feel they’re to blame, and are racked by feelings of guilt, as was in my case, I couldn’t understand why we never went out like we used to do. Was it my fault? Why did my mummy no longer take me in her arms? Had I been bad? I missed these simple, and yet essential things.

The few times we did go out, all eyes were fixed on my mummy and on us. Along with the home help, and the family domestic worker, we were observed like performers on a stage.

Slowly but surely, as the illness ate away at my mum, I was withdrawing into my shell...From then on, the illness meant that my mother had to be admitted to a specialist unit for various diseases. To this day, there is no specialist unit for Huntington’s disease. I watched as my mother slowly faded away. She was suffering; you could see it in her eyes. At least you could when her features betrayed the odd flicker of emotion.

From 2007 onwards, my mother was no longer talking, and stayed constantly in her hospital bed, doing nothing,...these regular visits which were important for her and for me were causing me more pain than was good for me, but I was aware that sooner or later she would meet her father, departed from this life through the same illness...

2007 was the hardest year emotionally. I knew that the disease was taking her away, and I took refuge in writing. This outlet really helped me.

One evening on the 29th December around 8 o’clock, we received a call from our aunt. My mum had been in a coma for 6 days through having contracted pneumonia. My spirits took a nose dive. The next morning, we took the first coach to make the hour’s journey which separated us...every day we went to see her. I knew that the end was in sight…but when?

In spite of my low morale, I celebrated the new year with my friends to forget things for one evening…the days passed with the same ritual every day : that coach, number 111, the only thing that could enable me to see the woman who had given me life…I remember it being Saturday, a Saturday morning. It was a quarter to ten…the telephone rang and my brother took the call. I was in the bathroom and then…I heard my brother screaming like I had never heard him scream before.  Going up to his side, there was no need to tell me what was happening. I just knew the worst. She had departed during the night at 1:00am

 I now know that I have this famous 50% chance of having the disease, but that also means a 50% chance of not having it.

If I tell you my story, it’s not to bemoan my life. It’s simply to share the experience I have had, at the height of my 16 years.

Today the fight that I am leading is to make Huntington’s disease known, and that is why I have made this site.