Trisomy Family Stories

SOFT UK
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A collection of stories and experiences from families dealing with Trisomy 13 and 18.

  1. 03/19/2025

    In Conversation With Mama Bear Care

    Beverly from Mama Bear Care, formerly known as Verity’s Village, shares her journey with her daughter Verity, who was diagnosed with Trisomy 18. She discusses how her experience led to the creation of her charity, providing support for Trisomy families across the U.S. Tune in to learn about their care program for parents facing a life-limiting diagnosis.   To find out more about their incredible work, visit: https://mamabearcare.org/who-we-are/

    26 min

  2. 03/19/2025

    In Conversation With Footprints Baby Loss

    SOFT UK had the privilege of speaking with Sharon and Suzie from the Babyloss Footprints Charity about the incredible support they provide to families navigating the loss of twins or triplets. Their work is truly inspiring.  To find out more about their incredible work, visit: https://footprintsbabyloss.org/

    23 min

  3. 01/30/2025

    Breaking the Silence with Rachel Kelly (TFMR)

    Join us as we speak with Rachel Kelly, mum to Avery and Forest, who both had prenatal diagnoses of trisomy 18. Rachel shares her deeply personal journey, including her living with a rare condition called 'balanced translocation' and her decision to pursue TFMR . Through her openness, Rachel aims to break the silence surrounding these experiences and offer support to others navigating similar paths.

    23 min

  4. 01/30/2025

    Breaking the Silence with Rachel Kelly (TFMR)

    Join us as we speak with Rachel Kelly, mum to Avery and Forest, who both had prenatal diagnoses of trisomy 18. Rachel shares her deeply personal journey, including her living with a rare condition called 'balanced translocation' and her decision to pursue TFMR . Through her openness, Rachel aims to break the silence surrounding these experiences and offer support to others navigating similar paths.

    23 min

  5. 01/28/2025

    The TRIS Project and Its Impact

    Join us as we speak to Dr Bruns, SOFT UK Professional Advisor, Principal Investigator of the TRIS Project, and Retired Professor in the US. Dr Bruns shares her fascinating journey into the world of rare diseases, her involvement with SOFT UK, and her work on updating the TRIS Project - an important initiative dedicated to cataloguing information about babies and children with trisomy conditions. Interested in enrolling? Visit the TRIS Project enrolment page: ⁠https://tris.siu.edu/survey/form/PreEnroll.php⁠ To reach out to SOFT UK for support or get in contact, visit: https://www.soft.org.uk/getting-support

    45 min

  6. 01/28/2025

    Team SOFT UK: Meet the People Behind the Mission

    Go behind the scenes with Shaun, Sonia, Kate, and Sarah as they share what it’s like to be part of Team SOFT UK. In this episode, they discuss their roles in supporting families, reflect on the highlights of their time with the charity, and offer a glimpse into the exciting plans and hopes for SOFT UK's future. Don't miss this inspiring conversation with the heart of our organisation! To reach out to SOFT UK for support or get in contact, visit: https://www.soft.org.uk/getting-support

    23 min

  7. 01/28/2025

    The TRIS Project and Its Impact

    Join us as we speak to Dr Bruns, SOFT UK Professional Advisor, Principal Investigator of the TRIS Project, and Retired Professor in the US. Dr Bruns shares her fascinating journey into the world of rare diseases, her involvement with SOFT UK, and her work on updating the TRIS Project - an important initiative dedicated to cataloguing information about babies and children with trisomy conditions. Interested in enrolling? Visit the TRIS Project enrolment page: https://tris.siu.edu/survey/form/PreEnroll.php To reach out to SOFT UK for support or get in contact, visit: https://www.soft.org.uk/getting-support

    45 min

  8. 01/28/2025

    Baby Nina’s Incredible Journey

    Dive into this amazing family story shared by Shakara, and featuring baby Nina herself! Defying medical predictions, Nina continues to thrive and amaze her family and the medical teams supporting her. From the early stages of testing and her birth to life today, this inspiring journey is one you won’t want to miss. To see the Crowdfund support for Shakara, visit: https://www.gofundme.com/f/support-baby-nina To reach out to SOFT UK for support or get in contact, visit: https://www.soft.org.uk/getting-support

    50 min
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About

A collection of stories and experiences from families dealing with Trisomy 13 and 18.

Information

  • Creator
    SOFT UK
  • Years Active
    2021 - 2025
  • Episodes
    82
  • Rating
    Clean
  • Copyright
    © SOFT UK