Juvenile Huntington's Weekend September 2007

Calvert Trust main building
It was a strange feeling going to the JHD weekend this year. My son Michael and his friend Bobby had both passed away and it was a different venue; how could it be as good?


Jamie (who had been one of Michael's carers), my daughter Kirsty and I, left Girvan at 1:30 pm for the the 150 mile journey. We had hoped to be at the Calvert Trust in England by 4:00 pm. We had the satellite navigation system so getting there should not have been a problem. Unfortunately, 'shouldn't' and 'wouldn't' have different meanings and we got lost, LOL!. We finally arrived at 5.15 in one piece, which is more than I can say for the satellite navigation system :). We were greeted by Helen and Cathy, the organisers. I have great respect for these people; they are wonderful.

One of the sad things about the JHD weekend is seeing these amazing families one year farther into JHD. The changes can be shocking. I could feel myself 'filling up' with emotion, but I had to put my sadness to the back of my thoughts. We were all there to have a good time and support each other. There were also some new families, more amazing people! We also had the pleasure of of meeting Stacie Vic from the University of Iowa who had also attended the U.S retreat.

Kirsty and friends acting in a skit
The first night was spent getting to know the new families and 'catching up' with old friends. We had a quiz and some of the kids and helpers performed a drama. It was hilarious! Kirsty got married to a mob boss who liked to breakdance; there are some photos on the JHD family website, well worth seeing! (www.jhdfamilies.co.uk).


On the Saturday morning, the kids went away with carers and staff to enjoy their activities; meanwhile, the parents attended some meetings. Everyone there talked openly and honestly, definitely beneficial to all. Sometimes it is the only chance that people get to vent their feelings and ask/answer questions on their loved ones' conditions.

At 6:30 on the Saturday evening we celebrated the lives of Michael and Bobby. We all lit a candle and released red, blue and white balloons (the colours of the Glasgow Rangers football team, both boys favourite team). Helen and Cathy read a lovely piece about "Water-bugs and dragonflies" which is all about teaching kids about death; it was very moving and lovely. We then enjoyed a barbecue washed down with a little alcohol (maybe not so little, LOL), a perfect end to a perfect day.

On the Sunday after breakfast while the kids were away in their canoes, we all gathered to hear one family's story of how they helped make their childs dream of swimming with dolphins come true. Once more, it was very touching. Then it was time for us to pack up and say our goodbyes, always the hardest part.

All-in-all another great weekend; it was as good as the previous ones. Even without Michael and Bobby, we still had a great time. Our thanks go out to Helen, Cathy and all the others who made it all possible.

Gordon Robertson