SOFT UK, the Support Organisation for trisomy 13/18 and related disorders, was founded in June 1990 by Jenny Robbins and Christine Rose.
In 1988, Jenny gave birth to a daughter, Beth, who had trisomy 13 and lived for three months. In the same year Christine had a son, Jonathan, who suffered from a partial form of trisomy 18 and lived until he was 19 years old. There was very little information for parents when Beth and Jonathan were born, and SOFT now publishes a range of literature covering the various problems families face when affected by these conditions. Jenny and Christine have since had healthy children and continue to co-ordinate SOFT activities together
‘As always the need for communication is paramount among all the professionals involved. Any one of us may see only a few families of babies with Trisomy and may not have the latest information to hand. The SOFT literature can also be of help to us and to colleagues in primary or community care, and is available on request. Much of the information applies to other handicapping conditions too.’
Dr Una MacFadyen
Paediatric Consultant & Medical Adviser to SOFT UK
‘I needed to explain to every shift change of staff why I was there, and that was a terrible strain. A year later the ante-natal staff were asking, ‘What’s Edwards’ syndrome?’ and a very experienced midwife told me it was all for the best as we could have been parents in our eighties with a 40 year old handicapped person to care for. She did not accept my explanation that only a small proportion of babies even reach their first birthday.’
Experience of one mother after a prenatal diagnosis of trisomy 18.