Episoder
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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 journey.
www.soft.org.uk
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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 here:
Amazon: https://www.amazon.co.uk/Frailty-Butterfly-Journey-Through-Newborn/dp/1667891715
Bookshop: https://bookshop.org/p/books/the-frailty-of-a-butterfly-my-journey-through-newborn-loss-mary-wasacz/20141396?ean=9781667891712
About Mary:
Mary Wasacz is a family therapist and clinical specialist certified by the American Nurses Association. She was the bereavement and spiritual care coordinator for hospice for over twenty years. Mary and her husband have three children and eight grandchildren. She and her husband are avid travelers who have visited all seven continents. They currently live in New York's suburbs, where they dote on their three parrots.
To reach out to SOFT UK visit: www.soft.org.uk
To contact us, email: [email protected]
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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 [email protected] support, contact [email protected] find out more, visit www.soft.org.uk
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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-soft-family-day-2023-tickets-645476015137?aff=oddtdtcreator Reach out at [email protected] support, contact [email protected] find out more, visit www.soft.org.uk
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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 out at [email protected]
For support, contact [email protected]
To find out more, visit www.soft.org.uk
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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 how it impacted her bonding with her son whilst pregnant. She shares some amazing anecdotes and a wonderful message about the importance of advocating for your child. Reach out at [email protected] support, contact [email protected] find out more, visit www.soft.org.uk
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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.Reach out at [email protected] support, contact [email protected] find out more, visit www.soft.org.uk
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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 you won't want to miss.
Reach out at [email protected]
For support, contact [email protected]
To find out more, visit www.soft.org.uk
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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 experience working with a family grappling with a diagnosis of balanced translocation trisomy 13, shedding light on the emotional complexities and medical considerations involved. Tune in to gain valuable insights into the world of genetic counseling, you're sure to learn something new!
*Correction for Podcast Content*
Egg and sperm cells normally have 1 copy of a chromosome and join together to make an embryo with 2 copies. If someone has a balanced translocation, sometimes when their DNA replicates and separates to make an egg or a sperm cell, the cell has 2 copies of a chromosome instead of the normal 1. This means when it joins with an egg or sperm cell with 1 copy, the resulting embryo has 3 copies of a chromosome and has a trisomy.
Reach out at [email protected] support, contact [email protected] find out more, visit www.soft.org.uk -
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 made a significant contribution to SOFT, and who Tina would like to thank.
If you're interested in learning more about volunteering with SOFT UK, this episode is for you. Listen in to discover how you can make a difference and get involved in our mission to support families affected by trisomy 13 and 18.Reach out at [email protected]
For support, contact [email protected]
To find out more, visit www.soft.org.uk
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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: https://raebanks.com/journeyforfaith/
Reach out at [email protected]
For support, contact [email protected] T
o find out more, visit www.soft.org.uk
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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: https://raebanks.com/journeyforfaith/Reach out at [email protected] support, contact [email protected] find out more, visit www.soft.org.uk
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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 space for their grieving. broken, hearts without any judgement…
Reach out at [email protected]
For support, contact [email protected]
To find out more, visit www.soft.org.uk
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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 [email protected]
For support, contact [email protected]
To find out more, visit www.soft.org.uk
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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 silence around TFMR.
Reach out at [email protected]
For support, contact [email protected]
To find out more, visit www.soft.org.uk
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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 [email protected]
For support, contact [email protected]
To find out more, visit www.soft.org.uk
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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 [email protected]
For support, contact [email protected]
To find out more, visit www.soft.org.uk
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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 [email protected]
For support, contact [email protected]
To find out more, visit www.soft.org.uk
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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 [email protected]
For support, contact [email protected]
To find out more, visit www.soft.org.uk
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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 [email protected]
For support, contact [email protected]
To find out more, visit www.soft.org.uk
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