Trisomy Family Stories

Claire Rowe bravely speaks of her Trisomy journey with her daughter Loreley. Having already faced a still birth she was devastated to find out her next pregnancy wasn’t to be as she hoped.   For more information, visit www.soft.org.uk For more information about screening, visit: https://www.soft.org.uk/in-pregnancy-copy

In this episode, we hear from Ann-Marie who received a diagnosis of Full Trisomy 18 at 20 weeks pregnant; news that would change the course of her pregnancy and her expectations overnight. She speaks candidly about carrying her son  Aangsuke  with both uncertainty and fierce love, and what it was like when he defied expectations and survived birth. What followed was a new challenge: advocating for...

In this episode, we’re joined by Enny, who shares the remarkable journey of her daughter Isabelle, now two years old and living with Full Trisomy 13. Enny speaks openly about receiving Isabelle’s diagnosis, navigating pregnancy with uncertainty, and the mixture of fear, love and determination that shaped those early months. She reflects on celebrating Isabelle’s first birthday, a milestone that on...

In this episode, we are honoured to be joined by Niamh Lynch, who shares the story of her beloved son, Cillian. At just 12 weeks pregnant, Niamh was told that Cillian had Trisomy 13, a diagnosis that would change everything. In this deeply moving conversation, Niamh speaks with honesty and grace about the months that followed: the shock, the fear, the love, and the impossible decisions no parent e...

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 w...

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/

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 simil...

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 simil...

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. I...

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 r...

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. I...

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...

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/suppor...

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 r...

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...

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...

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 journ...

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 her...

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

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-so...

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...

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 h...

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. R...

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...

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...