Trisomy Family Stories

 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...

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...

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...

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 spac...

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

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 sil...

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@so...

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

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...

We had a great chat with Chris O' Toole about his daughter Maria's story and what he has learnt 30 one years later . His perspective as a Dad, urging people to reach out for support was really touching. Reach out at contact@soft.org.uk For support, contact support@soft.org.uk To find out more, visit www.soft.org.uk

We spoke to our new Trisomy Advocate, Sarah Bowell, about her career background and what attracted her to the role at SOFT. To hear how she hopes to support families and what she is already working on, tune in! Reach out at contact@soft.org.uk For support, contact support@soft.org.uk To find out more, visit www.soft.org.uk

Join SOFT UK and the team as they discuss their upcoming fundraiser. They will be taking part in the Royal Parks Half Marathon and their training begins today! Check out our fundraising page here: https://www.justgiving.com/campaign/royalparkssoftuk

Following the recent storyline in Eastenders, where a couple have received a diagnosis of Trisomy 18, we wanted to answer a question that may arise from this. Can HIV cause Trisomy 13 or Trisomy 18?   In the story, the mothers partner has been diagnosed with HIV, and there have been questions regarding whether it could be a cause Trisomy 13 or Trisomy 18. In light of this, we wanted to reach...

We chatted with Brandon Huxhold, Fiona’s Dad, from Illinois in the US. He told us the extraordinary story about their daughter who has mosaic trisomy 18 and turns 2 in a few weeks. He describes her as a loving child whose siblings adore her. He explains  that she achieves everything in two thirds of the time it takes typical toddlers to do it. Listen to this lovely story as told by...

We chat to Sophie Peet from Genetic Alliance to hear more about what their charity does and about the Rare Disease day, celebrated on the last day of February. Listen to this conversation as she explains this year's theme and what they hope to achieve in 2023. To find out more about Genetic Alliance, visit: https://geneticalliance.org.uk/ If you want to get in contact with SOFT UK please email us...

We speak to our newest Professional Advisor, Jenny Hudson. She is a chiropractor with an interest in breastfeeding support about we hear how she came to be involved with SOFT and how she hopes to make a difference to the charity. To share your story or get involved get in touch: contact@soft.org.uk

We speak to our newest Professional Advisor, Jenny Hudson. She is a chiropractor with an interest in breastfeeding support about we hear how she came to be involved with SOFT and how she hopes to make a difference to the charity.

Some define a rainbow baby as a baby that is born after a loss. This podcast revisits Charlotte Clark's journey who currently is expecting her rainbow baby at 34 weeks. She shares life after Blaze and anwsers some interesting questions for those families trying or thinking about trying for a rainbow baby and/or expecting themselves. If you have a story to share, or wish to connect with other...

In this continuation of our conversation, Becky tells us about Heidi’s funeral, what bereavement felt like for her and why she became a SOFT trustee. 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 Instagr...

Charlotte Clark shares her amazing journey about her beautiful baby Blaze, who was diagnosed with Trisomy 18 during the pregnancy. Charlotte bravely shares the challenges and concerns she faced during this time. 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...

In a conversation that demonstrated many emotional ups and downs over the years, we spoke to Lauren, sister to Christine, who passed away 25 years ago from Trisomy 18. A really interesting account of how a sibling experiences the death of a sibling at a young age and how this can affect someone at every stage of life thereafter. If you have a story to share, or wish to connect with other fami...

Becky shared her story of baby Heidi's life including pregnancy, diagnosis and birth. She explains how she managed to overcome the negative outlook from doctors and find some positivity for her experience. 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.u...

In a very emotional and honest conversation, we heard from Paul McClean, Ben's Dad. This powerful story discusses difficulty falling pregnant,TFMR and seeking help following a loss. It's definitely not to be missed and we hope that it's a story that will help many others facing a similar situation.  If you have a story to share, or wish to connect with other families, then please reach out to...

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 ac...

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 oth...