It's strange what comes into your head at three a.m when you are supervising your son's art session in the kitchen after giving him breakfast at 2.15. (Murder? Sedatives? Ed.)
My son Dan, who is 15 years old and attends Samuel Pepys Special School in St Neots, has a rare genetic disorder called Angelman Syndrome (AS), caused by an error on chromosome 15 and resulting in severe learning difficulties, sleep disorder, epilepsy, challenging behaviour and lack of speech. It was once called Happy Puppet Syndrome, because people with AS generally have a happy, smiling disposition (or it's the end of the world and they are inconsolable) and they have co-ordination problems.
Through genetic research, such as the human genome project and the work of Harry Angelman himself, we know a lot about the causes of Angelman Syndrome, but, for parents, teachers and carers, all this is a bit academic and we have to take all that as a given. We need help to understand and cope with the symptoms of the condition and to give our children the best opportunities for a long, happy life. There are many hurdles along the way.
In the UK we have found the Angelman Syndrome Support, Education and Research Trust (ASSERT) http://www.angelmanuk.org/ to be really helpful. Every two years they organise a national conference at Loughborough University where we meet other families and attend lectures, exhibitions and workshops. This month we will attend a regional get-together in Hertfordshire.
My fellow rangers and the volunteers at Paxton Pits are well aware of Dan's condition and the effect on me. I often have to come to work late or leave early and I'm always tired and so it has an effect on them too; more work.
Instead of complaining, they have decided to help by raising money to promote awareness about Angelman Syndrome and to give support to parents, carers and teachers. I'm extremely proud and grateful.
Two of our rangers, Matt Johnson and Matt Hall volunteered to paddle my Canadian canoe from Bedford to Ely, and the rest of the staff, visitors and volunteers put up the sponsorship. The target is £600; roughly £10 a mile. They completed the trip this week, in 4 days, so it's time to pay up! The money will go to ASSERT.
I saw the lads on Friday, looking a bit stiff and grizzly (so no change there.) They have survived. They have conquered the thundering cataracts of the Great Ouse and reached safety at last. I don't think they can stand up straight yet though. Sitting down also seems to be a problem.
You can still contribute by going to our on line sponsorship form, www.justgiving.co.uk/mattandmatt
If you want to know more, contact us at paxpits@paxton-pits.org.uk
Thanks to Matt and Matt and all of you who sponsored them.
