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Scotland Family Day 2019

The sun was shining for our annual Scottish Family Event on 14th September 2019. Ten families attended the event, including many of our long-term members, some returning families and one new family.  We were sad to be missing some of our regular families this year and send best wishes to those who were away and get well soon wishes to Ayla and Murdo who were feeling a bit poorly!

Scottish Rep and Trustee Liz Egan made a lovely job of decorating the Family Room with all the children’s artwork from previous family days. The children were all delighted to see each other and welcome their new friends.

Karen McIntosh from ARC opened the event, talking about her work on the National Bereavement Care Pathways and the forthcoming introduction of NIPT testing in Scotland.  ARC and SOFT have been working in partnership in supporting families through the antenatal process for decades, so its especially exciting to work on these important developments with Karen.

Bonnie McKerracher from the Chromosome 18 Registry Europe was next to talk, telling families about the conditions they support and the fantastic international family events they run.  This is an important link for SOFT as some families initially anticipating a Trisomy diagnosis will actually be diagnosed with a different Chromosome 18 condition.  Working alongside Bonnie means that families should never fall through a gap in support and should get a seamless transfer from one support network to another.

We were delighted to welcome back the Van Tonder family from Shetland, who have been unable to attend for the last two years due to work and new babies! Emily beautifully told the story of the short life of their first daughter Kate-Lynne, who had Mosaic Trisomy 18. Emily gave a beautiful tribute to Kate-Lynne and also a wonderful snapshot of their family life together, a true testimony of how our special babies bring families and communities together. Since Emily and Etienne lost Kate-Lynne they have had three more beautiful children, Dylan, Lily-Ann and Magnus, who all joined us for the day.

Over lunch we all had lots of time to catch up with each other, hear the latest news and find out what the children had been doing in the creche.  This year they were painting flower pots and planting Forget-Me-Nots.

After lunch, our newest members David and Gina Scanlan spoke movingly about their daughter Willow, who had Trisomy 18. David talked about the trials they faced trying to access active medical care for Willow, particularly the cardiac surgery that she needed.  They also talked about the need of their elder son Jude and how he had coped and adapted during Willow’s life and after her death.

Jan Fowler, SOFT UK Chair, finished up the afternoon session updating families on what SOFT has been working on this year and what we hope to do in the coming 12 months.  SOFT UK hopes to involve local families in our new project creating a multimedia information hub of Trisomy resources for families and professionals.

SOFT UK would like to say a huge thankyou to all our families for making the effort to attend, to Liz Egan especially for organising and hosting the event, to all our professional and family speakers, to our wonderful creche who have supported us for many years, to the Glynhill Hotel for being lovely hosts and to our fantastic volunteers for helping set up and taking photographs all day!
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