Volunteers
Fundraising

MARLENE GRAHAM
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

LINDA POWELL
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!

DENISE COPLEY
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.
EMILY VAN TONDER
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.

TINA VAN EWYK
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
MEERA ARENDS
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.