Kabuki UK Scottish Meet Up
We’re really excited to report that on Saturday 9th September, thirty-two adults and children from eight families who have a child or young adult with a diagnosis of Kabuki Syndrome, gathered at the Glasgow Science Centre, to make contacts and share experiences.
For most people this was the first time they had met and five families from the Greater Glasgow area discovered that they all live less than 50 minutes from each other, with the potential for local catch-ups, now that connections have been made. Unfortunately, due to illness within two families on the day, there were nine less people than expected at the Science Centre, and both families were really disappointed to miss the event.
Kabuki UK donated the eye-catching green T-shirts for everyone, to mark this special occasion. These, along with the pop-up Kabuki banner near the Science Centre entrance, generated plenty of interest amongst other visitors as well as staff, meaning that the event helped with awareness-raising about Kabuki Syndrome too. A party of autistic adults and their carers were very interested to learn of the link, in some individuals, between Kabuki Syndrome and autism and assured our group that they would discuss this with Autism Scotland to raise awareness there too.
Families explored the Science Centre floors separately in the morning, re-convened for lunch and a raffle, with further explorations in the afternoon. Thankfully there were enough prizes for one per family (phew, as Ros forgot the raffle tickets and had to be quick-thinking ….!). Family names were drawn from a bag. Maybe some Dads tried to ‘direct’ youngsters to the alcohol as they selected their prizes but unsurprisingly, and thankfully, they were ignored and ‘Shaun the Sheep at the Beach’, (complete with knotted hankie) was the favourite for the Macbeth family along with colouring books and pens and sweeties chosen by the Birney, Harrison, Norrie, Rolfe and Rodriguez families, leaving the Harling/Snelhams to claim the Irish Whiskey (yes, really, Irish, in Glasgow). The defence was that it was kindly donated in the summer by Olivia Daly when she won it at the Hatton Family Day and couldn’t risk getting it through customs back to Cork! The donations/raffle bucket raised £81 on the day, which, with the addition of the Andersons’ house loose change collection of £17 will result in £98 being paid to Kabuki UK towards the costs of the day.
All families agreed that it would be great to repeat the meet-up before too long and Easter 2018 was suggested as a possibility. A family who live in the Scottish Highlands, who were unable to travel to Glasgow this year, had already asked if a future event could be held further north. Families at the meet-up day suggested Blair Drummond Safari Park, still far south of the Highlands but nearer than Glasgow! Watch this space! All suggestions are welcome.
Ros and Jenny Anderson organised the event, with the much-appreciated assistance of Sally Trewartha and the Kabuki UK Trustees, and also the very helpful staff at the Glasgow Science Centre.