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Family Day 2019

SOFT UK held its 2019 annual family day at the Marriott, Northampton on May 11, with Family Stories the chosen theme for this this year’s highly successful event.

Starting with teas and coffees, the Family Day provided a great opportunity for families to meet up, catch up with latest news and get to know some new additions.  The day began with an introduction by one of SOFT UK’s co-founders, Chris Rose, who talked about how she and Jenny Robbins started Soft UK in 1990. Chris’s son Jonathan had Partial Trisomy 18 and Jenny’s daughter Beth was diagnosed with Trisomy 13. After Chris’s talk Jan Fowler, Chairperson for SOFT UK, led a discussion about how our organisation has developed over the past 29 years.

Helen, Ryan and Shona shared their story about caring for Lewis, who has Mosaic Trisomy 18 and how it has affected their lives. Stacey shared her moving story about the life and loss of her beautiful son Angelo Jack. 

This year’s programme included updates from several medical professionals and researchers working with families affected by Trisomy. Nora Shannon gave an overview of Trisomy research ac
tivity; Erica Brown updated everyone on the next steps in siblings research and Helen Foster- Collins presented research findings on support for families.


To provide a peaceful environment, the remembrance room was available throughout the day for families and children. In memory of children that have passed away, hotel rooms were decorated with photos with heart shaped bunting and gold and silver stars so that families could write their messages in time for the remembrance ceremony later. It offered the ideal space for quiet reflection and the SOFT UK memory books were on display.

The children had a fantastic time in the creche and with the arts and science activities on in the afternoon! 

At the end of the of day we held a very moving remembrance ceremony. As music played, everyone was invited to pass golden stars forward (with their loved ones’ names and dates) from person to person. These stars were strung together to form a single unbroken garland and the garland then
hung on a tree and a rose presented to every family member.

SOFT UK would like to thank all the volunteers who worked hard for months to put this Family Day together. 

We would also like to thank the Marriot Hotel for their fantastic staff. Huge thanks  to Ceridwen Hughes of Same but Different for lending us her beautiful photographic exhibition to share with families at the SOFT UK Family Day.



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