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SOFT UK Family Day 2015

This year’s family day was a lovely event, taking place at the Hilton Northampton. It was wonderful to meet so many new families and welcome back familiar faces.

SOFT’s co-founding Trustee Chris Rose opened the morning. Jan Fowler (Chair of the SOFT UK Board of Trustees) followed with a summary of how SOFT is responding to the changes in NHS testing for T13 and T18.

We then heard from by a variety of speakers starting with Dr Nora Shannon who reviewed the current literature. Following this, Erica Brown facilitated a discussion with SOFT siblings about their experiences of living in a family touched by trisomy. Special thanks to Dr Daniela Robbins, Sophie Rose, and Ellie Herdman for agreeing to share their experiences. 

Prof. Joan Morris let SOFT families know about the changes to the collection of information on pregnancies diagnosed with T13 and T18. Responsibility for collection will move from the Wolfson Institute to the recently established National Congenital Anomaly and Rare Disease Registration Service.

Rounding off the morning, we heard from Helen Tarratt, mother to Lewis (mosaic trisomy 18). It was a treat to hear about how Lewis is growing up to be an amazing young man.

The session after lunch took a more informal tone, with family conversations on many subjects - including caring for a surviving child, being a grandparent to a child with trisomy, and bereavement.

Thank you to Claire and Scot Barlow  (Founders of Ariana’s Hope) who shared their story of setting up Ariana’s Hope in memory of their beautiful little daughter Ariana.

A day of sharing ended with a balloon release in the grounds of the Hilton, which was led by Fliss Reading.

Many thanks to everyone involved in this year’s family day - here’s to another super event in May 2016!

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