Trisomy Family Stories

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]

In support of Baby Loss Awareness Week 2023 we are talking with Kate Sonley, mummy to Amber.

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.

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

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.

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.

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

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.

 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

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