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SOFT UK Scottish Family Day 2011

The Scottish meeting was held on November 12th 2011 at the Dunblane Hydro Hotel, Dunblane,

Another great year at the Scotland Family Day with faces old and new in attendance. Sadly some regulars were unable to make it and were greatly missed, particularly Chris Rose, SOFT UK Trustee. We were delighted to welcome in her place, Grant Fraser, SOFT UK Trustee, and his partner Claire Evans, who came for the first time to the Scottish Family Day from England and we hope they really enjoyed their day.

The day started with time for the speakers, parents, and grannys to have a coffee and a good old natter before the official proceedings of the day took place. As people arrived it was clear that this was again going to be a popular event. There were many comments about the rainbows out on the drive to Dunblane, which was felt as a good omen by all!!!!!

As usual, the popular Crèche was open for business and I am pleased to announce there were plenty of children to keep the play workers on their toes! Demi Powell (SOFT UK Trustee) opened the Conference and Liz Egan, (Scotland Coordinator) started the “Family Time”, which was an opportunity for everyone to introduce themselves and tell their Trisomy story. This was a time full of emotion but with a feeling of support and understanding from the group as stories were shared. It is always good to hear new and known stories, remembering the children we have lost and celebrating the children who are still with us.

This year we had the pleasure of 3 professionals to share news on Trisomy 13/18 and related issues. Our first speaker was Dr Una MacFadyen, Consultant Paediatrician and SOFT UK medical adviser. Una is a yearly friendly face and gave us an update on the Managed Clinical Network for Children with Exceptional Healthcare Needs. Una also listened to families experiences of the positives and the challenges services present for families with Trisomy children and gave us some good ideas on developing relationships with the NHS.

Una then introduced her colleague, Chaplain Ken Russell from the Forth Valley Hospital in Larbert, who shared his experience of his role was within the hospital, outlining how, whether you are religious or not, he is there as a source of comfort and support in a time of need. He also informed us about his role as a trainer for the Managed Clinical Network, training medical professionals about communication with people who have severe and complex communication difficulties (as I write this I have just heard the Clinical Network has offered SOFT volunteers places on this training course, woohoo!!!).

It was then time for a lovely lunch which was another opportunity for a natter, to catch up with old friends and spend time with new faces. Most importantly a time to catch a cuddle from the precious children who were let loose from the creche to terrorise the dining room.

Our utmost gratitude goes to our next speaker, Professor Joan Morris, who made an epic journey to come and just spend the day with us, travelling from London at 5am to Edinburgh by plane and then driving up to Dunblane only to do the same journey back later that day. Joan shared her highly informative research on Trisomy 13 and 18, which is the most up to date and accurate research about the conditions in the UK today. (it is available on our website at www.soft.org.uk) Joan’s research felt like a revelation to many of our members and brought about great discussion on the positive implications research like this can have for the experiences of our children and families in the future.

The Conference day closed with a time of remembrance and celebration. Throughout the day the children and families decorated squares for our patchwork blanket which was a celebration of all the children in our lives; the Trisomy children who are still with us and those we have lost and their special siblings. The children from the creche came through to show off their work and families had a chance to share a few words about their children. Special thanks go to our wonderful poem readers, who made the time truly memorable; Erin Egan, Faith Petrie, Paula McColl and Linda Powell.

This was my second Conference and it was a pleasure to offer my services as a volunteer (I was the annoying one trying to get your photos!!!!). A special thanks goes to my little assistant Ellie Cockburn – a photographer in the making! I really hope the Family Day makes everyone feel at ease, as it has for me, especially for the new faces who are so welcome. It is great to be able to share my story and hear others in such a supportive group who understand what you have been or are going through. Huge thanks has to go to Demi Powell and Liz Egan and all the volunteers involved with SOFT in Scotland, without them we would not have special days like these. I am honoured to be a part of this and hope that SOFT can continue to grow and support families for a very long time to come.

Emily Van Tonder