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SOFT UK Volunteers

SOFT UK Support Volunteers

SOFT UK  Support Volunteers


THe 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 Team managers;



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.





In 2006 we contacted soft UK because we found out during our pregnancy that our daughter had Trisomy 18. Her name was Charlotte and she lived for six months. During the pregnancy and afterwards we received support from SOFT UK. The following year we ended another pregnancy due to severe brain abnormalities. We named her Jackie. I became involved with soft as a support volunteer in 2010 supporting families who had been affected by Trisomy 18 and Trisomy 13. In 2011 I joined the board of trustees and work with support volunteers and supporting families.





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.






Support Team:



I'm Mandy and I first got involved with SOFT UK for support, and to make contact with other parents after losing my baby daughter Bonnie at a day old in 1990 with Trisomy 13. She was a full term baby and until she was born I had no idea anything was wrong. When I had Bonnie, I had never heard of Trisomy 13 didn't even know what it was. SOFT UK was my life saver and helped me so much. I have a lovely son Daniel who is now 25.  I am now a volunteer support contact for SOFT UK,which I have been doing for nearly 3years.




In 2010 our first daughter Amelia was born with Edwards she lived 16 days and we have precious moments to remember. We contacted SOFT a few years later for support, they were wonderful 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 volunteer that answers any questions and offers 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 with raising awareness of trisomy.




I became a volunteer for SOFT UK as I felt that it would help me help others.  I had been through some of what people getting in touch with the charity were going through, so I thought I could help to support them through one of the most difficult times in their lives. I realise every story is different but just having someone to listen helps so much.




I joined as a volunteer after I lost my son Nathanial in 2017 to Trisomy 18. To find a charity who actually understood my son’s condition was a really big deal for me.I want to help other families through one of their most difficult times in their lives. I realise every story is different but just having someone to listen helps so much.I’m really passionate about making a change and raising the awareness of Trisomy by educating and supporting medical professionals and the community to create a caring environment that embraces families impacted by Trisomy.

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 anyway, 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.





Rosalind started volunteering for SOFT in 2019, putting her experience as a writer and editor to use. Her daughter, Martha, was diagnosed with full trisomy 18 following the routine 12-week screening and was born in February 2019. Rosalind is passionate about raising awareness of trisomy 18, as well as changing the perceptions of many in the medical community towards the condition.





My name is Nikita Burton, I’m 29 years old from Ipswich Suffolk. I help run the SOFT UK social media pages and recently set up the new Instagram account.
I have a son who is nearly 2 called finley and a daughter called Esmae who I lost at 18 weeks 3 days pregnant she had trisomy 18 I find volunteering for SOFT UK helps me keep Esmaes name out there and helps me to help others in similar or same situations I want to also raise awareness for these syndromes as until I had Esmae I didn’t understand any of them and now I do. 





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'. As I work for a charity as their Fundraiser, it made sense for me to help with fundraising enquiries but Im 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 72, 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 Edwards' 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 and speak of their big sister as well as 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 arrangeone of the Scottish SOFT family Day’s, t and wrote an article for the newsletter.  Due to work and life, I took a step back but now help proof readin.  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 still now.


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.

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