I am delighted to have become a trustee for SOFT UK.

My grandson Joshua was born in 2017 and was diagnosed with partial trisomy 18 at 8 weeks old, which was a complete shock to us all. I knew nothing about trisomy 18 and through research on the internet quickly came across SOFT UK.

As a parent and grandparent I found trying to support both my son and daughter-in-law alongside helping to care for Joshua and deal with my own anticipatory grief difficult. The ‘Coffee with SOFT’ calls really helped me through those first couple of years, especially the Grandparents calls. Joshua is severely disabled but has a full and happy life but his life expectancy remains uncertain.

Having worked in the NHS for 44 years both as a nurse and a Director, I want to use this experience to support families with a trisomy diagnosis by helping to improve health care professionals' knowledge and access to information about trisomy 13 and 18, so that they in turn can better support their patients and their families. I also hope that I can help other grandparents by sharing my experience and listening to theirs.