All the photographs can now be found in this image gallery.
Thanks to Cheryl Donlan, her family and friends and staff at the Novotel Manchester West – oh, and the weather – the third family conference of Chromosome 18 RRS Europe was a wonderful weekend.
There were some challenges with the creche which were admirably handled by three committee members on Saturday morning, but apart from that, everything went according to the plan Cheryl set out in her pitch to the committee less than a month after returning from Milan. Her whole aim was to make it a magical weekend for the children, and I think she succeeded.
There were balloons everywhere: she used them to mark out syndrome tables so that people could find others who are affected by the same disorder at our welcome reception on Friday evening; they marked out the route to the accommodation and rooms used for Music Therapy and Sibshops sessions; they provided ENDLESS amusement in the main foyer for at least one teenage boy (and amusement for me on Monday morning watching two guys from Maintenance getting them out of the rafters).
The presentations were all well attended, with the interpreters in their booths at the back of the room working to ensure that families could hear all of the speakers words in Italian, Spanish and German. The mix of presentations on research, music therapy, siblings issues, challenging behaviour, feeding issues, intensive interaction with people affected by autism, communication, apps for affected kids and more meant that there was something for everyone.
All surrounded by a safe, beautiful big garden where we sat as the children played.
But the most important aspect for me was that families travelled from many countries in Europe, trusting that their journeys and expense would be money well spent. There were families we could not trace as members who had read about our conference on the website, booked the hotel and came, knowing that they would be made welcome. And their faith and happiness in finding us made every minute of the work we did to raise the funds to put the conference together worthwhile. I hope those families who worked so hard over the past two years would agree.
Most magical moment for me has to be the unexpected arrival of the Brothers Meloni from Sardinia. Ever since I received an email from Orsolya asking if her beautiful baby daughter would survive to be an adult affected by Tetrasomy 18p – our self advocates panel in Milan gave adults affected by 18q-, 18p- and Ring 18 a chance to share their experiences – I had been praying that a self advocate affected by Tetrasomy 18p would arrive at our conference. I couldn’t find anyone living in Europe over 21 in all our lists. Davide Meloni is the most amazing role model. He participated in our Self Advocate Panel with the aid of translation by Sarah Rossotti and his brother Mattia, and was just a joy to be around. Candy Place, Matthew Bates, Becky Hunt, Elizabeth Cody and Kathryn Bridge are old hands at this now, and mother of two Simone Smith and Davide rounded out the team. All inspirational people, and I love them dearly for taking part to show parents of younger children that life can be good for people affected by Chromosome 18 disorders. Challenging, but with the right support, very good.
The adults who took part in Siblings Panel which closed the meeting are my other heroes. Sarah Hunt from Canada offered to run our Sibshop sessions, and she, Mattia Meloni, Jonathan Rugman, Becky Sime and Phillip Moore were able to answer questions from parents about growing up with a person affected by a Chromosome 18 disorder. Another one of my favourite sessions…
There are many, many other special moments for me, mostly centred in my head around snapshots of children who had never met before playing together, and parents relaxed and happy. Every time I think of Mia happily pushing Alex around in his wheelchair, I smile – I can’t help it. Too many to list in this short space. The Loom Band Wars, Marianne having her hair cut to be posted off to the Princess Trust, and Sarah Law coming in on her special tricycle with the cyclists who had ridden 200 miles from Dumfries to Manchester, raising thousands of pounds for Chromosome 18 Europe…oh my goodness! I shouldn’t have started!
What was your most magical moment?
Looking forward to the next conference in 2016: all we have to do is find another Cheryl or Sarah. Will you be the next conference organiser in a European city? I’ll help, I promise!
Bonnie McKerracher, Secretary