In 1988, Jenny Robbins gave birth to a daughter Beth. Blood tests revealed trisomy 13 when Beth was 4 days old and Jenny was asked whether she wanted to leave Beth at the hospital as the syndrome was considered terminal. Jenny and her husband nursed Beth at home and she was fed two hourly in a desperate attempt to help her gain weight. Apart from one visit from her GP and two visits from a community nurse there was no help or information and Beth died when she was 3 months old... 'the longest 12 weeks of my life!'. Jenny searched for other families and sent out detailed questionnaires to parents in the UK and America, and the first YOUR BABY booklet was compiled. Jenny stepped down as Chair of the Board of Trustees in November 2011.
In 1988 Christine Rose had a son, Jonathan, who suffered from a partial form of trisomy 18. Chris and her family continued to care for Jonathan, and he lived until he was 19 years old. A charity called 'In Touch' introduced Jenny and Chris to each other, and they founded SOFT UK. Jenny and Christine have since had healthy children and for over 20 years they have co-ordinated SOFT activities around the country together with a team of trustees and volunteers. Chris is a current member of the Board of Trustees.