Beverly from Mama Bear Care, formerly known as Verity’s Village, shares her journey with her daughter Verity, who was diagnosed with Trisomy 18. She discusses how her experience led to the creation of her charity, providing support for Trisomy families across the U.S. Tune in to learn about their care program for parents facing a life-limiting diagnosis. To find out more about their incredible work, visit: https://mamabearcare.org/who-we-are/...
Mar 19, 2025•26 min
SOFT UK had the privilege of speaking with Sharon and Suzie from the Babyloss Footprints Charity about the incredible support they provide to families navigating the loss of twins or triplets. Their work is truly inspiring. To find out more about their incredible work, visit: https://footprintsbabyloss.org/
Mar 19, 2025•23 min
Join us as we speak with Rachel Kelly, mum to Avery and Forest, who both had prenatal diagnoses of trisomy 18. Rachel shares her deeply personal journey, including her living with a rare condition called 'balanced translocation' and her decision to pursue TFMR . Through her openness, Rachel aims to break the silence surrounding these experiences and offer support to others navigating similar paths.
Jan 30, 2025•23 min
Join us as we speak with Rachel Kelly, mum to Avery and Forest, who both had prenatal diagnoses of trisomy 18. Rachel shares her deeply personal journey, including her living with a rare condition called 'balanced translocation' and her decision to pursue TFMR . Through her openness, Rachel aims to break the silence surrounding these experiences and offer support to others navigating similar paths.
Jan 30, 2025•23 min
Join us as we speak to Dr Bruns, SOFT UK Professional Advisor, Principal Investigator of the TRIS Project, and Retired Professor in the US. Dr Bruns shares her fascinating journey into the world of rare diseases, her involvement with SOFT UK, and her work on updating the TRIS Project - an important initiative dedicated to cataloguing information about babies and children with trisomy conditions. Interested in enrolling? Visit the TRIS Project enrolment page: https://tris.siu.edu/survey/form/Pre...
Jan 28, 2025•45 min
Go behind the scenes with Shaun, Sonia, Kate, and Sarah as they share what it’s like to be part of Team SOFT UK. In this episode, they discuss their roles in supporting families, reflect on the highlights of their time with the charity, and offer a glimpse into the exciting plans and hopes for SOFT UK's future. Don't miss this inspiring conversation with the heart of our organisation! To reach out to SOFT UK for support or get in contact, visit: https://www.soft.org.uk/getting-support...
Jan 28, 2025•23 min
Join us as we speak to Dr Bruns, SOFT UK Professional Advisor, Principal Investigator of the TRIS Project, and Retired Professor in the US. Dr Bruns shares her fascinating journey into the world of rare diseases, her involvement with SOFT UK, and her work on updating the TRIS Project - an important initiative dedicated to cataloguing information about babies and children with trisomy conditions. Interested in enrolling? Visit the TRIS Project enrolment page: https://tris.siu.edu/survey/form/PreE...
Jan 28, 2025•45 min
Dive into this amazing family story shared by Shakara, and featuring baby Nina herself! Defying medical predictions, Nina continues to thrive and amaze her family and the medical teams supporting her. From the early stages of testing and her birth to life today, this inspiring journey is one you won’t want to miss. To see the Crowdfund support for Shakara, visit: https://www.gofundme.com/f/support-baby-nina To reach out to SOFT UK for support or get in contact, visit: https://www.soft.org.uk/get...
Jan 28, 2025•50 min
Dive into this amazing family story shared by Shakara, and featuring baby Nina herself! Defying medical predictions, Nina continues to thrive and amaze her family and the medical teams supporting her. From the early stages of testing and her birth to life today, this inspiring journey is one you won’t want to miss. To see the Crowdfund support for Shakara, visit: https://www.gofundme.com/f/support-baby-nina To reach out to SOFT UK for support or get in contact, visit: https://www.soft.org.uk/g...
Jan 28, 2025•50 min
Go behind the scenes with Shaun, Sonia, Kate, and Sarah as they share what it’s like to be part of Team SOFT UK. In this episode, they discuss their roles in supporting families, reflect on the highlights of their time with the charity, and offer a glimpse into the exciting plans and hopes for SOFT UK's future. Don't miss this inspiring conversation with the heart of our organisation! To reach out to SOFT UK for support or get in contact, visit: https://www.soft.org.uk/getting-support...
Jan 28, 2025•23 min
Join us for a moving conversation with the remarkable couple, Mark and Ruth Jenner, as they share their family’s story - honouring their newborn Levi and the children they hope to meet again one day. Their refreshing approach to loss and life offers a unique perspective, with beautifully crafted descriptions that help explain concepts even adults find hard to grasp. Mark and Ruth would be happy to connect with others who feel their stories might intersect. If you’d like to reach out, this can be...
Jan 28, 2025•32 min
Join us for a moving conversation with the remarkable couple, Mark and Ruth Jenner, as they share their family’s story - honouring their newborn Levi and the children they hope to meet again one day. Their refreshing approach to loss and life offers a unique perspective, with beautifully crafted descriptions that help explain concepts even adults find hard to grasp. Mark and Ruth would be happy to connect with others who feel their stories might intersect. If you’d like to reach out, this can be...
Jan 28, 2025•32 min
We spoke with Vicky Pashby, mum to Arthur George, who had trisomy 13. Vicky bravely and honestly shared her experience, from learning about Arthur’s diagnosis to the difficult decisions she and her partner made, and how SOFT UK supported them along the way. She also talked about the incredible fundraiser she organised, which not only helped her give back but also became a part of her healing journey. www.soft.org.uk support@soft.org.uk
Nov 06, 2024•18 min
In today's podcast we are talking with Mary Wasacz about her journey with Cathy Anne. Mary recounts Cathy Anne's story and her diagnosis of Trisomy 18, and how she and her husband John gave her normalcy and love during her short life. Mary will also be reading an excerpt from her book about Cathy Anne's life: The Frailty of a Butterfly: My Journey Through Newborn Loss. You can find Mary's book here: Amazon: https://www.amazon.co.uk/Frailty-Butterfly-Journey-Through-Newborn/dp/1667891715 Bookshop...
Mar 13, 2024•44 min
In support of Baby Loss Awareness Week 2023 we are talking with Kate Sonley, mummy to Amber. Kate bravely talks about her story, sharing the ins and outs of her journey. Reach out at contact@soft.org.uk For support, contact support@soft.org.uk To find out more, visit www.soft.org.uk
Oct 13, 2023•31 min
Ahead of the annual Scottish Family Day we interviewed one of our longstanding parents Demi Powell who shared her story about Connor, her baby boy who was diagnosed with Trisomy 18, 22 years ago. It was a great insight to how she has found the family days over the years especially what makes the Scottish family day special. To register please sign up here https://www.eventbrite.co.uk/e/scottish-soft-family-day-2023-tickets-645476015137?aff=oddtdtcreator Reach out at contact@soft.org.uk For suppo...
Sep 12, 2023•32 min
The podcast today is part of our series, chatting to partner organisations to find out more about what they do. This podcast welcomes Nicola Enoch, joining us from Positive about Down Syndrome and she is their Founder & CEO. As a down's syndrome parent herself she set this charity up for families looking for further support and resources. Found out more: https://downsyndromeuk.co.uk/ Reach out at contact@soft.org.uk For support, contact support@soft.org.uk To find out more, visit www.soft.or...
Aug 10, 2023•27 min
We spoke to Mandy Nelson, mother to Amari, who has Trisomy 18 and who recently became a mother to Dante. In this episode, Mandy shares her heartfelt journey from her pregnancy with Amari, to the present day, where Amari is now a thriving 3.5-year-old, albeit with special educational needs. She also took us through what it's like having a baby after a high risk pregnancy and shared honestly about how it impacted her bonding with her son whilst pregnant. She shares some amazing anecdotes and a won...
Jul 06, 2023•42 min
We spoke to Becky Smith, Mum to Freddie who had trisomy 18 and more recently, she became Mum to Jaxon, her Rainbow baby. Becky opens up about her overwhelming fears and anxiety throughout the pregnancy, revealing how she cautiously began preparing for the arrival of her little one only around the 30-week mark. Step into her world and immerse yourself in a real-life story of pregnancy after loss. Reach out at contact@soft.org.uk For support, contact support@soft.org.uk To find out more, visit www...
Jun 29, 2023•24 min
Join us for an insightful episode of the SOFT UK podcast as we speak with Jess Scott, whose life has been profoundly influenced as a rainbow baby after the loss of her sister, Sarah, to Patau syndrome. Listen to her remarkable journey, and how it has shaped her relationships, career, and parenting. Be sure to catch her three important messages at the end, delivering a story of honesty and optimism you won't want to miss. Reach out at contact@soft.org.uk For support, contact support@soft.org.uk T...
Jun 21, 2023•21 min
Join us for an enlightening discussion with Beth Hughes, a trainee Genetic Counselor, as we delve into the fascinating world of genetic testing and ethics. In this episode, we explore a range of intriguing topics, including the cutting-edge advancements like Non-Invasive Prenatal Testing (NIPT), the concept of Mainstreaming, and the roll out of improved newborn screening. Beth shares her firsthand experience working with a family grappling with a diagnosis of balanced translocation trisomy 13, s...
Jun 14, 2023•37 min
In our latest podcast episode, we had the pleasure of speaking with Tina, one of our dedicated volunteers at SOFT UK. Tina has taken on various roles with us since she first got involved, and in our conversation, she shares what she's learned from volunteering and how she puts those lessons into practice in her everyday life. We also had the opportunity to hear about the individuals who have made a significant contribution to SOFT, and who Tina would like to thank. If you're interested in learni...
May 31, 2023•11 min
Join us for a heartfelt conversation with Raliene and Josh Banks, parents of Faith, a beautiful soul diagnosed with Trisomy 13 in 2022. In this inspiring dialogue, we explore the untold perspective of a grieving father, gain invaluable insights they wish they knew earlier, and witness their incredible resilience in their #JourneyForFaith. Discover more of their touching story at Raliene's blog: https://raebanks.com/journeyforfaith/ Reach out at contact@soft.org.uk For support, contact support@so...
May 18, 2023•41 min
Join us for a heartfelt conversation with Raliene and Josh Banks, parents of Faith, a beautiful soul diagnosed with Trisomy 13 in 2022. In this inspiring dialogue, we explore the untold perspective of a grieving father, gain invaluable insights they wish they knew earlier, and witness their incredible resilience in their #JourneyForFaith. Discover more of their touching story at Raliene's blog: https://raebanks.com/journeyforfaith/ Reach out at contact@soft.org.uk For support, contact support@so...
May 18, 2023•41 min
We spoke to Emma Belle, mother of Willow and founder of TFMR Mammas and #TFMRAwarenessDay. She put it beautifully when she told us why TFMR awareness day is so important. She said: “...so that anyone faced with this decision or having gone through this type of loss can go to one place and know that every single resource on there has been checked, is safe, is going to be a soft, loving landing space for their grieving. broken, hearts without any judgement… Reach out at contact@soft.org.uk For sup...
May 04, 2023•20 min
We spoke to Simone Adams, mother to Maebh, who has trisomy 18 and is affected by some of the issues highlighted by Deaf Awareness week. She shares how her daughter's hearing loss was discovered and how it affects Maebh's day-to-day life. Reach out at contact@soft.org.uk For support, contact support@soft.org.uk To find out more, visit www.soft.org.uk...
May 03, 2023•16 min
In this episode, we had the privilege of speaking to Marie about her personal journey through TFMR and how she has been coping with the help of her husband. She shared with us some surprising insights she gained from the experience that she hopes will help others going through a similar situation. Tune in to hear Marie's heartfelt story about her baby Heidi and her passion for breaking the silence around TFMR. Reach out at contact@soft.org.uk For support, contact support@soft.org.uk To find out ...
May 02, 2023•27 min
We spoke to Richard, Sarah's brother, who passed away from Patau's syndrome (trisomy 13) in 1989. He shared his story and what he could remember as a 3 year old at the time. He also shared a powerful message about mental health and finding acceptance in a situation and looking for the positive in every situation- in this case was bringing the family closer together. Reach out at contact@soft.org.uk For support, contact support@soft.org.uk To find out more, visit www.soft.org.uk...
Apr 06, 2023•17 min
We spoke to Sarah Dowdall, mother to Emilia, with mosaic trisomy 18 about the journey to diagnosis as well as how she copes with the uncertainty of what this will mean for her daughter in the future. Reach out at contact@soft.org.uk For support, contact support@soft.org.uk To find out more, visit www.soft.org.uk
Mar 20, 2023•21 min
Listen to the roundtable discussion about what it was like working with EastEnders on the Trisomy 18: Edwards syndrome storyline. We’re joined by some of the people who were directly involved in talking to producers, actors and story researchers. We hope you’ll enjoy this ‘behind the scenes’ look at what went on. Reach out at contact@soft.org.uk For support, contact support@soft.org.uk To find out more, visit www.soft.org.uk...
Mar 20, 2023•30 min
