Home > Help for Families > What Support is Available? > SOFT UK Family Events > Previous Family Days > SOFT UK Family Weekend 2016

SOFT UK Family Weekend 2016

It was wonderful to see so many familiar and new faces at the family weekend. This year was particularly important, as it was SOFT UK’s 25th anniversary so the planning committee had worked hard to make it a weekend to remember!

Around one hundred and forty people travelled from far and wide to attend. This included the Solberg and Fuglem Berg families from Norway, the Joseph family from France, and Professor Carey who flew from America. Saskia, Lewis, Lily, Nathan, Darra, Lexi-Mae, Cali, Amilah, Ayla, Ole, Sophia, Christelle and Malaika were some of the children affected by T13/18 who came to the family weekend, and it was brilliant to see them looking so well.

The weekend began with an introduction by one of SOFT UK’s co-founders, Chris Rose. She talked about how she and Jenny Robbins started SOFT UK in 1990 after the birth of Jonathan Rose who had partial trisomy 18, and Beth Robbins who had trisomy 13. It is incredible to see how far SOFT UK has come since then, an era before mobile phones and Internet! Jan Fowler (chairperson of SOFT UK) followed with a discussion about how SOFT UK has developed since.

Dr John Carey (Professor of paediatrics, University of Utah) was our keynote speaker and was introduced by one of our own medical advisors, Dr Nora Shannon (consultant clinical geneticist, Nottingham). John Carey has published research on T13/18, cared for many children affected by the conditions and previously attended the SOFT UK family weekend in 2011. The trustees were honoured he accepted their invitation to join us again on our 25th anniversary. John gave an informative presentation about T13/18, answered questions from the audience and led a workshop answering more specific questions parents had about their children. His presence at the weekend was invaluable.

We were also very grateful to Dr Una MacFadyen (consultant paediatrician, Forth Valley Royal Hospital, and medical advisor to SOFT UK) who drove from Scotland to be with us. It was good to see Professor Joan Morris (SOFT UK advisor) who is currently completing a project about recurrence risk, and Barbara Rosenthal (SOFT UK counsellor) who facilitated our bereavement workshop. Erica Brown (SOFT UK counsellor) discussed the findings of her pilot project that looked at the effect T13/18 has on siblings. On Sunday, Dr Siri Fuglem Berg gave a moving talk about her experience of trisomy as a parent and a doctor, and how she has used this to try and help other families. 

Throughout the weekend the Remembrance room was available for families and children. The room provided a quiet environment for reflection, and the SOFT UK Memory Books were on display. In other rooms there were magazines and papers of interest from SOFT UK Archives, and a laptop showing the SOFT UK website and videos. The Hilton provided a fabulous anniversary cake, and despite being large it was almost finished by Sunday!

Luckily the wind behaved for the balloon release! Prior to lift off Jenny Robbins, co-founder, said a few words about how this was a way for us to remember the children we have sadly lost, and celebrate those that are with us. Jenny also designed a programme booklet that was given to everyone attending the weekend. It contained the timetable of events, and a photograph and paragraph from the SOFT UK advisors, counsellors, trustees, volunteers and many SOFT UK families.

Many of the children (and adults!) enjoyed swimming in the indoor pool, and the dinner with a magician on Saturday evening was a great success. There was also time to speak to other families affected by trisomy and professionals knowledgeable about T13/18.

The weekend was a huge success but there are always things that can be changed, so please return your feedback form or email your suggestions to administrator@soft.org.uk. On behalf of everyone at SOFT I would like to thank our planning committee (John Capper, Liz Egan, Gareth Glendinning, Heidi Herdman, Sue Orme, Jenny Robbins, and Chris Rose), our speakers and workshop facilitators (Jan Fowler, Dr Shannon, Professor Carey, Dr MacFadyen, Dr Fuglem Berg, Erica Brown, Barbara Rosenthal), and Kirsty Bassett, the SOFT UK administrator.

Planning for next year’s event will need to begin shortly, so if anyone wants to become involved then please contact administrator@soft.org.uk!