Skip to main content
Trisomy Family Stories

Trisomy Family Stories

By SOFT UK
A collection of stories and experiences from families dealing with Trisomy 13 and 18.
Where to listen
Google Podcasts Logo

Google Podcasts

Pocket Casts Logo

Pocket Casts

RadioPublic Logo

RadioPublic

Spotify Logo

Spotify

Currently playing episode

Against All Odds: Jam Jam Can

Trisomy Family Stories

1x
In Conversation With Sandeep: A fathers perspective of Trisomy 13
In honour of Father's day this year, we spoke to Sandeep Sankoli, husband to Sonia, from SOFT UK and father to Dhian, and two other young children. Listen to this unusual story including IVF treatment, and a missed diagnosis of Trisomy 13 during pregnancy. Hear how long it took for the family to get a conclusive diagnosis and all about their journey with their precious son. It is a really great account by a Dad and so enlightening to hear his perspective on things. If you have a story to share, or wish to connect with other families, then please reach out to:  contact@soft.org.uk To connect with SOFT UK, please visit our pages: Website: www.soft.org.uk Facebook:  http://www.facebook.com/SOFTUK Instagram: https://www.instagram.com/soft_uk/ Twitter:  http://twitter.com/soft_uk
42:51
June 16, 2022
A siblings perspective of Trisomy
In a first for SOFT podcasts, we spoke to Faith Jackson - Docherty, a sibling affected by Trisomy 18. She tells us of her memories of her baby sister Charlotte, from when she was 4 years old. The importance of parents speaking openly and honestly is apparent when she tells her story. A useful listen for any expectant parents wondering how to handle a diagnosis of trisomy 13/ 18 with their other children. If you have a story to share, or wish to connect with other families, then please reach out to:  contact@soft.org.uk To connect with SOFT UK, please visit our pages: Website: www.soft.org.uk Facebook:  http://www.facebook.com/SOFTUK Instagram: https://www.instagram.com/soft_uk/ Twitter:  http://twitter.com/soft_uk
11:03
June 03, 2022
Fundraising With The Flock: Flockmass
Listen to this upbeat chat about the first gaming fundraiser done for SOFT, late last year. We discuss the group that took on the challenge; plus all the people involved in making the event a success. A really unique and fun fundraiser that ended up over achieving the set target. To find out more about The Fock head over to: https://www.twitch.tv/team/theflock If you have a story to share, or wish to connect with other families, then please reach out to:  contact@soft.org.uk To connect with SOFT UK, please visit our pages: Website: www.soft.org.uk Facebook:  http://www.facebook.com/SOFTUK Instagram: https://www.instagram.com/soft_uk/ Twitter:  http://twitter.com/soft_uk
09:36
May 26, 2022
Trisomy Awareness Month: Empowering Hope
We spoke to an amazing couple, Sarita and Kareem Edwards about their incredible 5 year old son, Elijah with full Trisomy 18. It's an inspirational way to end off #TrisomyAwarenessMonth as he is so well for a child with this condition. The podcast includes an endearing guest appearance by Elijah himself. It's also a wonderful opportunity to hear from a Dad when we discussed how this diagnosis affected them as a couple. It's all summed up with their message of hope and love at the end. If you have a story to share, or wish to connect with other families, then please reach out to:  contact@soft.org.uk To connect with SOFT UK, please visit our pages: Website: www.soft.org.uk Facebook:  http://www.facebook.com/SOFTUK Instagram: https://www.instagram.com/soft_uk/ Twitter:  http://twitter.com/soft_uk
45:51
March 31, 2022
Trisomy Awareness Month: Talking with Gareth, a trustee and fathers perspective
This conversation with Gareth is an important one, as we hear how Dads can be affected by baby loss. His daughter, Phoebe, lived for 3 days and he found it terribly difficult to deal with at the time. His involvement with SOFT began by running sponsored races to raise funds for SOFT and has evolved to him 'meeting and greeting' people at SOFT conferences and now as a Trustee. We value his involvement and it's interesting to hear how SOFT has changed in the time he has been involved. If you have a story to share, or wish to connect with other families, then please reach out to:  contact@soft.org.uk To connect with SOFT UK, please visit our pages: Website: www.soft.org.uk Facebook:  http://www.facebook.com/SOFTUK Instagram: https://www.instagram.com/soft_uk/ Twitter:  http://twitter.com/soft_uk
23:50
March 23, 2022
Trisomy Awareness Month: Talking with Juliette, a trustee and volunteer perspective
We spoke to Juliette about her personal journey with her daughter, Amelia, who had Trisomy 18. It's touching to hear how she has both relied on SOFT for support and now provides it as a support volunteer and trained bereavement counsellor. It's truly a labour of love for the Bradley family, as Juliette's husband, Matt, helps SOFT with their website and IT. If you have a story to share, or wish to connect with other families, then please reach out to:  contact@soft.org.uk To connect with SOFT UK, please visit our pages: Website: www.soft.org.uk Facebook:  http://www.facebook.com/SOFTUK Instagram: https://www.instagram.com/soft_uk/ Twitter:  http://twitter.com/soft_uk
14:28
March 16, 2022
Trisomy Awareness Month: Interview with Jenny Robbins, a founder of SOFT UK
Listen to this informative chat with Jenny Robbins, founding member of SOFT UK. We heard the fascinating story of how SOFT was started back in the 1980s in the context of limited/ outdated information on Trisomy 13 and 18. Listening to how connections were made locally and overseas with other families with Trisomy 13 and 18 babies and children, through surveys and letters, was so interesting. We found out about the very first conferences and how the support that SOFT offers has changed with the advent of technology. If you have a story to share, or wish to connect with other families, then please reach out to:  contact@soft.org.uk To connect with SOFT UK, please visit our pages: Website: www.soft.org.uk Facebook:  http://www.facebook.com/SOFTUK Instagram: https://www.instagram.com/soft_uk/ Twitter:  http://twitter.com/soft_uk
15:33
March 12, 2022
Trisomy Awareness Month: Verity's Village
We had a catch up with Beverly Jacobson in the States to hear how her daughter Verity, with Trisomy 18 is; what's new with Verity's Village since we last spoke and how the launch of her book 'From Diagnosis to Delivery' is doing as well as what her plans for Trisomy Awareness month are. We also shared all the exciting things SOFT UK have planned for the month of March to celebrate #TrisomyAwarenessMonth. If you have a story to share, or wish to connect with other families, then please reach out to:  contact@soft.org.uk To connect with SOFT UK, please visit our pages: Website: www.soft.org.uk Facebook:  http://www.facebook.com/SOFTUK Instagram: https://www.instagram.com/soft_uk/ Twitter:  http://twitter.com/soft_uk
29:16
March 08, 2022
The Right Choice for You: Emma's Story
As part of our Ended Pregnancies series of podcast, 'The Right Choice For You' we spoke to Emma Belle, mum to Willow and founder of support group, TFMR Mamas, . She spoke openly about their IVF journey, and how they heartbreakingly discovered that the baby she was carrying had Trisomy 18. Listen to her powerful message at the end about finding safe spaces to express yourself and find support. If you have a story to share, or wish to connect with other families, then please reach out to:  contact@soft.org.uk To connect with SOFT UK, please visit our pages: Website: www.soft.org.uk Facebook:  http://www.facebook.com/SOFTUK Instagram: https://www.instagram.com/soft_uk/ Twitter:  http://twitter.com/soft_uk
30:28
March 02, 2022
Bereavement: Other Peoples Reactions
Today we talk about the difficult subject of how other people handle the loss of your baby. Hannah shares some of the strange things that people have said to her, sometimes out of panic as they don't know what else to say, and the impact that this had on her. If you have a story to share, or wish to connect with other families, then please reach out to:  contact@soft.org.uk To connect with SOFT UK, please visit our pages: Website: www.soft.org.uk Facebook:  http://www.facebook.com/SOFTUK Instagram: https://www.instagram.com/soft_uk/ Twitter:  http://twitter.com/soft_uk
20:01
February 22, 2022
Bereavement: The Impact on Relationships
In this podcast we spoke with Hannah. We discussed what impact losing her son Cillian had on Hannah's marriage and other significant relationships in her life. It was interesting to hear how she has changed as a person and how this has had an effect on others around her. If you have a story to share, or wish to connect with other families, then please reach out to:  contact@soft.org.uk To connect with SOFT UK, please visit our pages: Website: www.soft.org.uk Facebook:  http://www.facebook.com/SOFTUK Instagram: https://www.instagram.com/soft_uk/ Twitter:  http://twitter.com/soft_uk
17:12
February 15, 2022
Bereavement: Ways of coping
We spoke to Hannah about some of the coping mechanisms she has developed since losing her son Cillian. Some are the usual things we've all heard of before, but one is rather unusual and was even surprising to her. If you have a story to share, or wish to connect with other families, then please reach out to:  contact@soft.org.uk To connect with SOFT UK, please visit our pages: Website: www.soft.org.uk Facebook:  http://www.facebook.com/SOFTUK Instagram: https://www.instagram.com/soft_uk/ Twitter:  http://twitter.com/soft_uk
11:07
February 08, 2022
Bereavement: Chloe's Story
We spoke to Chloe about her daughter, Penelope, whose Trisomy 18 diagnosis was missed during pregnancy, but who lived for 2,5 years. The months and years that followed her loss were extremely tough and there were times when she didn't know how she or her husband would make it through. She bravely explains how she has since been diagnosed with Complex PTSD and is seeking help with a psychologist. Hear more about her journey and what she has done for SOFT UK in Northern Ireland. If you have a story to share, or wish to connect with other families, then please reach out to:  contact@soft.org.uk To connect with SOFT UK, please visit our pages: Website: www.soft.org.uk Facebook:  http://www.facebook.com/SOFTUK Instagram: https://www.instagram.com/soft_uk/ Twitter:  http://twitter.com/soft_uk
21:19
February 01, 2022
Bereavement: Loss During Lockdown
We spoke to Hannah about the difficulties of experiencing loss during lockdown and how she managed to plan her baby's funeral despite all the restrictions. She speaks beautifully about the ways in which they still made the event special and kept traditions that meant a lot to their family. If you have a story to share, or wish to connect with other families, then please reach out to:  contact@soft.org.uk To connect with SOFT UK, please visit our pages: Website: www.soft.org.uk Facebook:  http://www.facebook.com/SOFTUK Instagram: https://www.instagram.com/soft_uk/ Twitter:  http://twitter.com/soft_uk
21:38
January 25, 2022
Bereavement: Hannah's Story
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 volunteer. Hear more about her journey as well as her message for other bereaved families. If you have a story to share, or wish to connect with other families, then please reach out to:  contact@soft.org.uk To connect with SOFT UK, please visit our pages: Website: www.soft.org.uk Facebook:  http://www.facebook.com/SOFTUK Instagram: https://www.instagram.com/soft_uk/ Twitter:  http://twitter.com/soft_uk
17:38
January 18, 2022
Against All Odds: Helen's Story
Helen is expecting a baby girl with Trisomy 18 and she joins us for a podcast conversation as part of our 'Against All Odds' series. We chat about the journey through diagnosis, their uncertainty around continuing the pregnancy or not, as well as the added complications of having older children already. We also hear how joining the monthly SOFT support calls helped to normalise some of the feelings she was experiencing. If you have a story to share, or wish to connect with other families, then please reach out to:  contact@soft.org.uk To connect with SOFT UK, please visit our pages: Website: www.soft.org.uk Facebook:  http://www.facebook.com/SOFTUK Instagram: https://www.instagram.com/soft_uk/ Twitter:  http://twitter.com/soft_uk
47:20
December 20, 2021
The Right Choice for You: Naomi's Story
Naomi’s story is the 3rd one in the ended pregnancy series, ‘The Right Choice for You’. She was very open about her experience, from discovering the issues, to the end of the journey including funeral arrangements. 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. If you have a story to share, or wish to connect with other families, then please reach out to:  contact@soft.org.uk To connect with SOFT UK, please visit our pages: Website: www.soft.org.uk Facebook:  http://www.facebook.com/SOFTUK Instagram: https://www.instagram.com/soft_uk/ Twitter:  http://twitter.com/soft_uk
56:50
December 17, 2021
The Right Choice for You: Rachel's Story
The next podcast in the ended pregnancy series, ‘The Right Choice for You’, is with Rachel, who was a first time Mum when she discovered problems during the routine screening offered during pregnancy. She tells us how she came to the decision and what impact that has had on her life since.)
46:40
December 13, 2021
The Right Choice for You: Caroline's Story
Today’s podcast is the first in our ended pregnancy series called ‘The Right Choice for You’. It’s a very open and 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. If you have a story to share, or wish to connect with other families, then please reach out to:  contact@soft.org.uk To connect with SOFT UK, please visit our pages: Website: www.soft.org.uk Facebook:  http://www.facebook.com/SOFTUK Instagram: https://www.instagram.com/soft_uk/ Twitter:  http://twitter.com/soft_uk
42:36
December 10, 2021
Against All Odds: Chelsea's Fundraising
This podcast was an interview with Chelsea Fenwick who undertook fundraising in memory of her daughter Esme. She managed to raise £10 000 and we hear more about her journey with her beautiful daughter and some of the milestones they shared along the way. If you have a story to share, or wish to connect with other families, then please reach out to:  contact@soft.org.uk To connect with SOFT UK, please visit our pages: Website: www.soft.org.uk Facebook:  http://www.facebook.com/SOFTUK Instagram: https://www.instagram.com/soft_uk/ Twitter:  http://twitter.com/soft_uk
14:37
December 06, 2021
Against All Odds: Leo's Fundraising Walk Around the World
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. If you have a story to share, or wish to connect with other families, then please reach out to:  contact@soft.org.uk To connect with SOFT UK, please visit our pages: Website: www.soft.org.uk Facebook:  http://www.facebook.com/SOFTUK Instagram: https://www.instagram.com/soft_uk/ Twitter:  http://twitter.com/soft_uk
22:02
November 29, 2021
Against All Odds: Ben's Fundraising
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.
11:47
November 22, 2021
Against All Odds: Jam Jam Can
Today we are talking with Serena as she tells Jam Jam's story and how she has worked to help young children understand such a complex situation through the power of story. Find the book on Amazon: https://anchor.fm/softuk/episodes/Against-All-Odds-Jam-Jam-Can-e19ug09 If you have a story to share, or wish to connect with other families, then please reach out to:  contact@soft.org.uk To connect with SOFT UK, please visit our pages: Website: www.soft.org.uk Facebook:  http://www.facebook.com/SOFTUK Instagram: https://www.instagram.com/soft_uk/ Twitter:  http://twitter.com/soft_uk
40:26
November 15, 2021
Against All Odds: 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! If you have a story to share, or wish to connect with other families, then please reach out to:  contact@soft.org.uk To connect with SOFT UK, please visit our pages: Website: www.soft.org.uk Facebook:  http://www.facebook.com/SOFTUK Instagram: https://www.instagram.com/soft_uk/ Twitter:  http://twitter.com/soft_uk
10:31
November 08, 2021
Against All Odds: Verity's Village
This is the second podcast from our "Against all Odds" series. 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.
38:44
November 01, 2021
Against All Odds: Leo's Story
This is Leo’s story as told by Mum, Lucinda. He has been affected by an extremely rare genetic disorder affecting his TBCD gene. The condition is so rare that 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, there is hope despite all the uncertainty of the circumstances and this is actually a positive story. If you have a story to share, or wish to connect with other families, then please reach out to:  contact@soft.org.uk   To connect with SOFT UK, please visit our pages:   Website: www.soft.org.uk  Facebook:  http://www.facebook.com/SOFTUK Instagram: https://www.instagram.com/soft_uk/ Twitter:  http://twitter.com/soft_uk
26:55
October 25, 2021
Accessible Iris - Enabling Families To Go On Holiday
In todays interview we are talking with Jemima about her incredible fundraiser 'Accessible Iris'.  Both 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   To connect with SOFT UK, please visit our pages:   Website: www.soft.org.uk  Facebook:  http://www.facebook.com/SOFTUK Instagram: https://www.instagram.com/soft_uk/ Twitter:  http://twitter.com/soft_uk
20:07
July 06, 2021
Behind The Scenes With SOFT UK: Introduction
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!   To grab your invite to our virtual event, head on over to:   https://www.eventbrite.co.uk/e/soft-uk-virtual-family-event-tickets-156078839009?fbclid=IwAR1_fHqqzEIhTQ1elky-gNClWDOg_3Iqw3vSQcX9elcobjfpn8XucyXPRNU   If you'd like to donate and support, please visit our Go Fund Me page:   https://gofund.me/91a28316   To share your story, contact: contact@soft.org.uk
07:03
June 15, 2021
Shaun's Story: The importance of letting it out for dads
In todays 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. To get in contact, please email, contact@soft.org.uk
07:29
May 21, 2021
SOFT UK NHS Digital Project
SOFT UK is proud and excited to announce a collaborative project with the NHS.  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.   If you would be interested in helping, please complete this short surveyor email us.   Email: contact@soft.org.uk  Survey link: https://forms.gle/oWyzbWDmLxzeaN1Y7
02:31
May 12, 2021
SOFT UK Family Stories - Episode 7: Heidi
A conversation with Heidi.
21:04
March 27, 2021
SOFT UK Family Stories - Episode 6: Laura
A conversation with Laura.
17:25
March 20, 2021
SOFT UK Family Stories - Episode 5: Larry
A conversation with Larry.
15:49
March 13, 2021
SOFT UK Family Stories - Episode 4: Kate
A conversation with Kate
20:03
March 06, 2021
SOFT UK Family Stories - Episode 3: Simone
A conversation with Simone.
13:57
March 02, 2021
SOFT UK Family Stories - Episode 2: Jemima
A conversation with Jemima.
12:10
March 02, 2021
SOFT UK Family Stories - Episode 1: Juliette
A conversation with Juliette
14:12
March 02, 2021
SOFT UK Family Stories - Introduction
SOFT UK Family Stories - Episode 1: Introduction
04:19
February 23, 2021