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SOFT UK  Support Volunteers


SOFT UK Support Volunteers are all parents who have had a child affected by Trisomy.  They work on a voluntary basis and undertake a high level of training to ensure they are able to offer the support families need.  They work closely as a team and try and match volunteers to families as enquiries come in.  Most people who come to SOFT UK for support will have spoken to at least one of the team at some point. 


Support Service Coordinators:



I have been the chair of SOFT UK since 2010. I lost two pregnancies myself, although not through Trisomy 13 or 18, before I had my daughter Jess, now a beautiful 23-year old. My experiences and those of a close friend led me to SOFT. I am a nurse by background and have worked in the NHS as a Director and Chief Executive for over 30 years. I hoped that my knowledge of the NHS might help SOFT raise awareness of Trisomy syndromes and support our families now and in the future.






My first baby Kieran was born with T18 Edward’s Syndrome and lived for 8 days. We were very fortunate to be handed a SOFT booklet and contact details in hospital as soon as Kieran’s diagnosis was confirmed. The support from SOFT was invaluable and this made me want to become involved to help others. I became Scottish Rep in 1996 and then went on to become a Trustee. I am also the current SOFT treasurer. I find my voluntary work with SOFT very rewarding and feel very proud to be involved with a charity that offers much needed support to parents at such a difficult time in their lives.






My daughter Angharad was born in 2010 and died after 11 days, the support my family and I received from SOFT UK was a great help.
I have been a telephone/email support volunteer for 8 years and I support families through extremely challenging times
These times can be especially difficult for fathers, so I feel I am in a good position to give a male perspective on Trisomy.




Support Team:  



In 2010 our first daughter Amelia was born with Edwards' Syndrome. She lived 16 days and we have precious moments to remember. We contacted SOFT a few years later for support, they were wonderfu;l it felt like a life line realising we were not alone. The support was invaluable and helped us grieve. In 2017 myself and my husband felt ready to help other families like us in Amelia’s memory. I am a support volunteer, answering any questions and giving support to any friends, families or health professionals affected by Trisomy 13 or 18. 





I'm Sonia and I have been a support volunteer for SOFT UK since 2017. My son was   born in 2015 and was diagnosed at 10 days with full Trisomy 13. He survived for 6 beautiful months and 4 days and left me and my family with the best of memories. SOFT UK was a great support to me after I lost my son and I got to know more families in my position. I joined as a volunteer to hopefully help other families that find themselves in my situation and keep my son's legacy going by raising awareness of Trisomy.





My journey started in 1998 when we received the results, through routine tests cvs & amino that our baby had full T18. We have gone on to have 3 sons, which we are incredibly grateful for.  I have wanted to volunteer for Soft for some time & to be able to help anyone who needs help while awaiting results it can be such an awful time of uncertainty during this wait.  I have worked  within the NHS.





In June 2020 my first child Cillian was diagnosed with trisomy 13. I was 31 weeks pregnant. Sadly, our angel was born sleeping five days after our diagnosis. I’m from Northern Ireland and the hospital didn’t give me any information about Soft but I came across them myself. Speaking with other bereaved parents gave me the most incredible comfort and support and I am so happy to be able to help others. It is the most beautiful way to honour my son, keep his memory alive and be there for other parents. I made him a promise I would make him proud and I can’t think of a better way to do it.

I'm Chloe and my daughter Penelope was born in 2015 with full Trisomy 18. She lived for 2 years and 6 months, and although Penelope's medical needs were very complex, her life was filled with lots of love, smiles and happy memories which we will cherish forever. Penelope now has 2 younger sisters, Stella and Elsie and I can't wait to tell them how amazing their big sister was. 
I first got involved with SOFT in 2019 when I helped to organise the family day in Northern ireland and have since joined as a support volunteer. My hope is to help other families who find themselves in a similar situation and to keep Penelope's memory alive in doing so.

Hi I'm Simone, I joined SOFT in February 2018 after my daughter got her T18 diagnosis at 10 days old. I was given lots of valuable advice from a peer volunteer, parents were able to give us support too as we started on our journey. My little girl is now 3 years old, and we still have such alot to do with the charity. I hope to pass my positive experiences on and be an ear for other parents.


Website and Social Media Team

Website and Social Media Team



My wife and I became aware of SOFT UK in 2013 after we lost our baby Amelia to Edwards' Syndrome. SOFT UK has been wonderful to us, providing care and support during this difficult time. So we felt that being involved with the charity was a great way to give something back to others going through the same situation. Since 2017 I have been helping SOFT UK with their technology needs including their new website. I am not medical in any way, but I do have a 25-year history in providing IT and technology to businesses, so this seemed the perfect fit to help SOFT UK into the future and to raise awareness of Trisomy 13 and 18.





Jay writes the blog “Living with Cali” for SOFT. Cali was born in 2014 and was diagnosed postnatally with full Edwards Syndrome. Prior to having Cali, Jay ran a business, lived in Spain, had a keen interest in yoga and meditation and trained to be a counsellor. Since having Cali, and another daughter two years later, she has been a mother and carer. In 2018 she started work supporting disabled people and carers with the task of employing a PA or carer. Jay writes the blogs partly to help her make sense of the life she has with Cali and partly in the hope that it might be of help and interest to other parents and professionals.




My name is Lydia Bown, I am 22 years old and currently living in London. I am a recent Biological Sciences graduate from The University of East Anglia (UEA) and I am currently studying my master's in Applied Biosciences and Biotechnology at Imperial College London. I am passionate about communicating and raising awareness for rare genetic diseases and so I have joined the SOFT UK Writing team to provide families with the information for every stage of their journey. 





In 2010, I was 17.5 weeks pregnant when I discovered my baby boy, Logan, had Trisomy 18. I can still remember how broken, lost and empty I felt. The information and support provided by SOFT UK and other families I met through the charity was invaluable. Logan hung on until the 38th week, but sadly died in utero. I've had 2 more children who are now 3 and 5 and know about their 'big brother Logan up in the sky'. I work for another Charity as their Fundraising Manager, so it made sense for me to offer help with fundraising enquiries. However, I'm happy to roll up my sleeves and get stuck in with whatever needs done. 




Proof - Reading



Hi, I’m Linda Powell, Granny of Connor Adam, who was born asleep on the 13th June 2001. In those days we had to search for on-line comfort in Australia or America. My daughter gave me the information she had found, and I spent many night-time hours on the conversation forum, looking for, and often finding, some solace. I also tried to give comfort where I could.  At 73, and with limited time, there isn’t much I can do to help the charity, but I have been proof-reading for the SOFT magazine for some years now. In the early days this was done by snail-mail, and the transition to doing it all on-line has been a steep learning curve!





 I am Denise Copley, nanan to Jack David Capper who was born with Edwards’ Syndrome in 2010 and I do a little proof-reading for SOFT UK.







Hi, I’m Emily. Our first daughter Kate-Lynne was born on the 4th December 2009.  There were some concerns raised during the last half of my pregnancy but she was only diagnosed with Edward's Syndrome when she was a week old, and later as mosaic.  We got home a few days before Christmas and were able to spend time with our families.  Her health was up and down, but she was an absolute joy and we feel so lucky to have had 14 weeks with our 'peerie lass'.  Kate-Lynne now has two brothers, 7 and 2, and a sister who is 5.  We have photos of Kate-Lynne around the house, the kids speak of their big sister and we take them all to her grave.  We feel it is important for them to know they have a big sister but also it helps us to keep her memory alive.  I started out volunteering for SOFT by taking photos at the Scottish family day,  then I helped to arrange one of the Scottish SOFT family Days and I wrote an article for the newsletter.  Due to work and life, I took a step back but now I help by proof reading documents.  For now, this works for me as it may only be a few times a year but gives me an opportunity to feel like I am helping in some small way.  I know first-hand how valuable these materials were to me when our daughter was first diagnosed and they still are now.



Hello, my name is Tina van Ewyk.  I’ve just joined SOFT UK’s volunteer force as a proof reader and I’m looking forward to making a contribution to SOFT’s work.

SOFT UK helped my family enormously in 1995 when my beloved nephew Riley was born with trisomy 13.  The information booklet and sheets that SOFT UK provided helped my brother and sister-in-law with caring for their son.  Riley touched many people’s lives during the six months that he lived.  I’ve always been grateful that SOFT UK exists, as I know first-hand what a lifeline the charity provides when people’s lives have been turned upside down.



Family Events


I first heard about SOFT UK in December 2016 when my daughter, Hope, was diagnosed with Trisomy 18, aged 10 days old.  Hope proved every doctor wrong. They predicted she’d live about 3 weeks. She fought on, getting bigger and stronger every day. Sadly, in October 2017 she got very sick. She passed away just 4 days short of her 11 month birthday. Shortly after I was approached by a friend who is a make up artist. She wanted to start her own eyelash range and she wanted to name it Hope’s Lashes. Not only that she wanted help raise awareness and to contribute part of the proceeds to SOFT UK. In June 2018 I contacted SOFT UK to see if they were happy to be associated with Hope’s Lashes. A few weeks later I received an email asking if I’d be interested in becoming a volunteer and the rest is history! I’ve found it’s been therapeutic and healing process to be part of such worthy cause. Although I’m fairly new as a volunteer I have already seen what a great team it is. We have all walked similar paths and are able support each other as well families.
My younger sister, Charlotte had Edward's Syndrome. And my mum, Laura has been a trustee with SOFT for a few years now. I was inspired to join the team, after seeing the positive impact SOFT has had not only on my family but on me as well. I really want to make a difference, and this seemed like a great way to do so. I'm currently studying healthcare at college with hopes to start studying adult nursing in September next 2023. 

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