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Beth was born in 1988 when there was no medical support or means to contact other families, no internet and no information apart from post-mortem statistics.

After the diagnosis of Trisomy 13 we were given two stark choices: leave Beth in the hospital or take her home to die.

We cared for her at home and she died aged 3 months when a nurse gave her oral sedative prior to a brain scan, and some went into her lungs.
My frantic search for information brought me into contact with Chris Rose and together we founded SOFT UK.  

Twenty-five years later, families have access to information booklets, published research, family meetings, medical experts and Facebook where experiences can be shared.

After retiring, I co-founded Trisomy 18/13 Support UK and International Trisomy Alliance.  At ITA we work closely with Trisomy 18/13 organisations worldwide to collate research, provide translations of booklets, and encourage advocacy.

Jenny Robbins

SOFT UK Co-Founder


SOFT UK has always been a part in my life.  My sister Beth had Trisomy 13 and was born in 1988 when there was very little information or support.  Sadly, Beth died when she was just 12 weeks old, but my mother Jenny went on to co-found SOFT with Christine Rose and I was born soon afterwards.I remember playing in the crèche at the early SOFT UK conferences and I am now a Trustee!

Beth and many SOFT UK families I have met over the years have influenced my career choices and approach to work as a GP. I look forward to helping SOFT UK continue to support families in the future.

Daniela Robbins, 

SOFT UK Trustee

Created: 28/01/2019 19:43

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