My mother, Jenny Robbins, co-founded SOFT UK with Chris Rose in 1990 after the birth of my sister Beth, who had trisomy 13. Beth lived for three months and SOFT UK has continued to grow into the wonderful organisation it is today. I was involved with SOFT UK from an early age, initially as a toddler playing in the creche at Family Days, later as the editor of the newsletter, and now as a trustee. Having completed my medical degree in 2012, I now work as a GP in South Wales where I live with my husband and our two children. I think my experience with SOFT UK has helped influence my medical practice, and that my medical background can now help with what I can contribute to SOFT UK.  

Although trisomy 13/18 are the second and third most common trisomies, they are still rare, so understandably neither medical school nor junior doctor training devoted much time to them. Even doctors who specialise in obstetrics, foetal medicine, neonatal care and paediatrics may not have had experience of trisomy 13/18, which makes the role of SOFT UK even more important. We aim to help both those personally affected by trisomy 13/18 and the professionals who may be caring for them. By raising awareness and providing accurate information, compassionate support and a space (physical or virtual) for people to share knowledge and experiences, SOFT UK hopes to help all those affected by trisomy 13/18.