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SOFT UK podcasts

We have produced 4 series of podcasts with SOFT UK families. Each tells a personal story of their experience of Trisomy 13 or 18. The conversations range in subject matter from bereavement, ending a pregnancy, continuing a pregnancy after diagnosis, fundraising, a dad’s perspective, and living with Trisomy.
We are so grateful to all the individuals who took part in this series of insightful and honest podcasts. If you would be interested in sharing your story on our podcast, please email kate.hart@soft.org.uk

Series 4: Bereavement

We have noticed that our community really comes together for each other, especially at the time of a loss. It's fantastic that there is this empathetic support from peers and because SOFT UK always has been here for you, every step of your journey, we decided to do a podcast series on the difficult subject of Bereavement. Join support volunteer, Hannah, as she talks to us about her son Cillian; what it was like facing loss during lockdown; what coping mechanisms she has found; the impacts on her marriage; as well as how she remembers her baby. We also welcome anyone who would like to tell their story to come forward.

Episode 1: Introduction

We spoke to Hannah O'Gallachoir about her antenatal diagnosis of baby Cillian's condition, Trisomy 13. We discussed how she found out about SOFT and why she loves volunteering for us as a support line volunteer. Hear more about her journey as well as her message for other bereaved families here: https://anchor.fm/softuk/episodes/Bereavement-Hannahs-Story-e1d2hib 

Series 3: ‘The Right Choice For You’

This series of stories focuses on the difficult decision families have made to end their pregnancy, giving a voice to those who can often feel silenced. It is so important to us as a support organisation, that we represent stories about Ended Pregnancies as everyone’s journey is equally important and we respect everyone’s choices. We hope that this will go some way to breaking down barriers.

Episode 3: Naomi’s story

She was very open about her experience, from discovering the issues during the pregnancy, to why she made the decision, to the end of the journey including funeral arrangements for her baby, Paige. She felt it was important to tell her story as there were no others around like it when she was going through the same thing.
Listen here: https://anchor.fm/softuk/episodes/The-Right-Choice-for-You-Naomis-Story-e1bq1cf/a-a73u63m 

Episode 2: Rachel’s story

We speak to first time Mum, Rachel, about when she discovered problems during the routine screening offered in pregnancy. She tells us how she came to the decision and what impact that has had on her life since.
Listen here: https://anchor.fm/softuk/episodes/The-Right-Choice-for-You-Rachels-Story-e1bk0ak/a-a733kth 

Episode 1: Caroline’s story

It’s a brave conversation with Caroline, who discusses all the considerations in making the extremely difficult decision to end her pregnancy. We hear about the emotions and thoughts she experienced afterwards and how she has coped over since losing her son, 7 years ago.
Listen here: https://anchor.fm/softuk/episodes/The-Right-Choice-for-You-Carolines-Story-e1b36ej/a-a70omdh 

Series 2: ‘Against All Odds’ podcast series

This series features stories from families whose children are not only surviving but thriving. Be prepared to be inspired!

Episode 8: Helen’s story

Helen is expecting a baby girl with Trisomy 18, and we chat about the diagnosis, their uncertainty around continuing the pregnancy or not, as well as the added complications of having older children. We also hear how joining the monthly SOFT support calls helped to normalise some of the feelings she was experiencing.
Listen here: https://anchor.fm/softuk/episodes/Against-All-Odds-Helens-Story-e1bu9pe/a-a74frjo 

Episode 7: Chelsea’s fundraising

This podcast was an interview with Chelsea Fenwick who undertook fundraising in memory of her daughter Esme. She raised an incredible £10 000, and we hear more about her journey with her beautiful daughter and some of the milestones they shared along the way.
Listen here: https://anchor.fm/softuk/episodes/Against-All-Odds-Chelseas-Fundraising-e1b346a/a-a70odg2 

Episode 6: Leo’s fundraising

We chat to Mum, Lucinda about her fundraising walk for her son, Leo. As well as another fundraiser that was set up at very short notice by an amazing organisation. She also updates us on the progress made with finding a treatment for his ultra-rare condition.
Listen here: https://anchor.fm/softuk/episodes/Against-All-Odds-Leos-Fundraising-Walk-Around-the-World-e1avdd8/a-a708i6t 

Episode 5: Ben’s fundraising story

Ben ran the London marathon in October for SOFT UK in memory of his baby who had Trisomy 18 and passed away during pregnancy in March 2019. He raised £2,825.45 for the cause and this is his story.
Listen here: https://anchor.fm/softuk/episodes/Against-All-Odds-Bens-Fundraising-e1afaru/a-a6u3r5o 

Episode 4: JamJam’s story

Listen to Mum, Serena tells Jam Jam’s incredible story. She turned an upsetting situation into something hopeful and positive by writing the book: “JamJam Can!” to change perceptions and educate children about disabilities and being ‘different’.
Listen here: https://anchor.fm/softuk/episodes/Against-All-Odds-Jam-Jam-Can-e19ug09/a-a6rqsqc 

Episode 3: Lucy’s fundraising 

This is Lucy's story of losing baby Albert in Aug 2016 and how fundraising for SOFT UK became her way of telling his story and giving herself something positive to focus on. An inspirational story from a very strong lady!
Listen here: https://anchor.fm/softuk/episodes/Against-All-Odds-Lucys-Fundraising-e19t132/a-a6rklkr 

Episode 2: Verity’s Village

We chat to Beverly, who is Verity's Mum, a 4-year-old girl living in the US with Trisomy 18. Listen to this inspirational story of how she is doing and how their experience has inspired her Mum to set up a charity called 'Verity's Village' which aims to support other families with a prenatal diagnosis of Trisomy 18.
Listen here: https://anchor.fm/softuk/episodes/Against-All-Odds-Veritys-Village-e18un96/a-a6nlbvh 

Episode 1: Leo’s story

Leo has been affected by an extremely rare genetic disorder affecting his TBCD gene. He is only the sixteenth child on record in the world to be diagnosed with this specific gene mutation. The TBCD mutation affects his brain, central nervous system and muscles. As a result, he has epileptic seizures and low muscle tone, which means he has difficulty moving and breathing. However, he is responding well to the therapy is receiving, despite having a condition so rare it doesn’t have a name.
Listen here: https://anchor.fm/softuk/episodes/Against-All-Odds-Leos-Story-e18un76/a-a6nlbq4 

Series 1: SOFT UK Family Stories

Accessible Iris - Enabling Families To Go On Holiday

In this interview we talk to Jemima about her incredible fundraiser 'Accessible Iris'. Jemima and her partner Cody, aim to convert a campervan into something that families with children with complex needs, can use to travel and go on holidays. To find out more, visit their page: https://www.facebook.com/AccessibleIris To help and support, visit: www.crowdfunder.co.uk/accessible-iris
Listen here: https://anchor.fm/softuk/episodes/Accessible-Iris---Enabling-Families-To-Go-On-Holiday-e140mi6/a-a62otnj 

Behind the Scenes

In this introductory episode to Behind The Scenes With SOFT UK, we'll be exploring a little more about what this series will involve. Join us on our journey as we build our virtual event, welcoming families from all over, and hear about some of our new and exciting projects we are involved in!
Listen here: https://anchor.fm/softuk/episodes/Behind-The-Scenes-With-SOFT-UK-Introduction-e12nnsk/a-a5sg7rf 

Shaun’s Story: The importance of letting it out for Dads

In this podcast episode we join Shaun, our Engagement Officer as he recounts his story and shares the importance of talking about what you're going through. Shaun's daughter Emilia has Mosiac Trisomy, and he shares candidly about the impact of uncertainty during his partner's pregnancy and its effects on his own mental health.
This episode discusses societal pressures on men, the mental toll of a loss in control and the positive impact of sharing how you feel about what you're going through.
You're not in it alone. If you would like to talk with someone that understands, please feel free to contact our Support Team.
Listen here: https://anchor.fm/softuk/episodes/Shauns-Story-The-importance-of-letting-it-out-for-dads-e10q79a/a-a5i7elm 

NHS Digital Project: An introduction

SOFT UK is proud and excited to announce a collaborative project with the NHS, an introduction to which can be found in this podcast episode. We are working with Public Health England, NHS Digital and the Down’s Syndrome Association to create 2 films that will help families affected by Trisomy. These films will be widely distributed by the NHS and SOFT UK so are hugely important and will help so many families in their time of greatest need and uncertainty.
These films will be shaped by families with recent, lived experience of Trisomy. We are looking for a variety of experiences, ranging from pre-natal diagnosis, ending the pregnancy, to living with the condition.
Everyone’s experience could truly help to make a difference and support families during their early stages of learning about the condition, the support available, and options open to them.
The one thing we hear time and time again, is that families wish they had known more at the start of their journey. Both SOFT UK and the NHS are determined to offer that to families in the future, so by sharing your experience, you will be helping us to shape this vision.
Listen here: https://anchor.fm/softuk/episodes/SOFT-UK-NHS-Digital-Project-e10nsm7/a-a5hr8n0 

SOFT UK Family Stories - Episode 7: Heidi

Click here to listen: https://anchor.fm/softuk/episodes/SOFT-UK-Family-Stories---Episode-7-Heidi-eqeh4q/a-a4l7arm 

SOFT UK Family Stories - Episode 6: Laura

Click here to listen: https://anchor.fm/softuk/episodes/SOFT-UK-Family-Stories---Episode-6-Laura-eqeh12/a-a4l7ace 

SOFT UK Family Stories - Episode 5: Larry

Click here to listen: https://anchor.fm/softuk/episodes/SOFT-UK-Family-Stories---Episode-5-Larry-eqegtg/a-a4l78ud 

SOFT UK Family Stories - Episode 4: Kate

Click here to listen: https://anchor.fm/softuk/episodes/SOFT-UK-Family-Stories---Episode-4-Kate-eqegkt/a-a4l78aa 

SOFT UK Family Stories - Episode 3: Simone

Click here to listen: https://anchor.fm/softuk/episodes/SOFT-UK-Family-Stories---Episode-3-Simone-eqeghd/a-a4l77m4 

SOFT UK Family Stories - Episode 2: Jemima

Click here to listen: https://anchor.fm/softuk/episodes/SOFT-UK-Family-Stories---Episode-2-Jemima-eqeg6t/a-a4l75u0 

SOFT UK Family Stories - Episode 1: Juliette

Click here to listen: https://anchor.fm/softuk/episodes/SOFT-UK-Family-Stories---Episode-1-Juliette-eqefve/a-a4l74i0 

SOFT UK Family Stories - Introduction

Click here to listen: https://anchor.fm/softuk/episodes/SOFT-UK-Family-Stories---Introduction-eqa9oj/a-a4kb98d 

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