Trisomy Family Stories

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...

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 diagn...

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 inv...

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, o...

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 We heard the fascinating story of how SOFT was started back in the 1980s in the context of limited/ outdated information on Trisomy 13 and 18.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 interes...

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 c...

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 fin...

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 wi...

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 con...

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: Websi...

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. H...

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: &nb...

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:  c...

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 t...

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...

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.)

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...

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...

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 SO...

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.

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...

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: We...

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.

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...

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.crowdf...