Trisomy Family Stories

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

  1. 4D AGO

    In Conversation With Ann-Marie

    In this episode, we hear from Ann-Marie who received a diagnosis of Full Trisomy 18 at 20 weeks pregnant; news that would change the course of her pregnancy and her expectations overnight. She speaks candidly about carrying her son  Aangsuke  with both uncertainty and fierce love, and what it was like when he defied expectations and survived birth. What followed was a new challenge: advocating for him within a medical system that did not always assume intervention was appropriate. With courage and determination, she shares her experience of fighting for certain surgeries and care decisions, navigating complex conversations with professionals while holding onto hope for her child. This is a story not only of diagnosis and difficulty, but of joy, resilience and the profound love that drives a parent to stand firm for their child. It is an honest reflection on what advocacy looks like when the future is unclear and on the unexpected moments of hope that can unfold along the way.

    36 min

  2. 4D AGO

    In Conversation With Enny

    In this episode, we’re joined by Enny, who shares the remarkable journey of her daughter Isabelle, now two years old and living with Full Trisomy 13. Enny speaks openly about receiving Isabelle’s diagnosis, navigating pregnancy with uncertainty, and the mixture of fear, love and determination that shaped those early months. She reflects on celebrating Isabelle’s first birthday, a milestone that once felt unimaginable, and what life looks like today as their family prepares for the next chapter: nursery. This conversation is honest and uplifting in equal measure. Enny shares the realities of medical appointments and advocacy, but also the everyday joys, laughter and personality that define Isabelle far beyond her diagnosis.

    37 min

  3. MAR 2

    In Conversation With Niamh

    In this episode, we are honoured to be joined by Niamh Lynch, who shares the story of her beloved son, Cillian. At just 12 weeks pregnant, Niamh was told that Cillian had Trisomy 13, a diagnosis that would change everything. In this deeply moving conversation, Niamh speaks with honesty and grace about the months that followed: the shock, the fear, the love, and the impossible decisions no parent ever expects to face. Niamh reflects on carrying Cillian, bonding with him, and learning how to hold space for both hope and heartbreak at the same time. She also shares how reaching out to SOFT UK became a source of comfort, connecting her with other families who truly understood what she was facing, and reminding her that she was not alone on this path. Through speaking with parents who had walked similar journeys, Niamh found reassurance, strength and a sense of belonging during an otherwise isolating time. Her story is not only about loss, but about love, connection and the quiet power of being heard. This episode is a tribute to Cillian’s life and to the enduring strength of a mother’s love. It offers comfort and solidarity to families walking similar paths, and invites listeners to sit with a story that deserves time, care and compassion.'

    33 min

  4. 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

  5. 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

  6. 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

  7. 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

  8. 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
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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 - 2026
  • Episodes
    85
  • Rating
    Clean
  • Copyright
    © SOFT UK