Trisomy Family Stories
By SOFT UK
Trisomy Family StoriesNov 15, 2021
From Past To Present: Reflecting on Demi's Trisomy 18 Journey
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 contact@soft.org.uk For support, contact support@soft.org.uk To find out more, visit www.soft.org.uk
Embracing the Extraordinary Journey: Positive about Down syndrome
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 contact@soft.org.uk
For support, contact support@soft.org.uk
To find out more, visit www.soft.org.uk
Pregnancy after a Trisomy 18 diagnosis
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 contact@soft.org.uk For support, contact support@soft.org.uk To find out more, visit www.soft.org.uk
Leaving the hospital with my Rainbow baby
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 contact@soft.org.uk For support, contact support@soft.org.uk To find out more, visit www.soft.org.uk
A Sibling's Path: From Loss to Strength as a Rainbow Baby
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 contact@soft.org.uk
For support, contact support@soft.org.uk
To find out more, visit www.soft.org.uk
Navigating the Complexities of Genetic Counseling: Insights from a Trainee Genetic Counselor
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 contact@soft.org.uk
For support, contact support@soft.org.uk
To find out more, visit www.soft.org.uk
Making a Difference: The Power of Volunteering with SOFT 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 contact@soft.org.uk
For support, contact support@soft.org.uk
To find out more, visit www.soft.org.uk
Improve, Inspire, Empower (Bereaved)
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 contact@soft.org.uk
For support, contact support@soft.org.uk T
o find out more, visit www.soft.org.uk
Improve, Inspire, Empower (Bereaved)
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 contact@soft.org.uk For support, contact support@soft.org.uk To find out more, visit www.soft.org.uk
The origins and aims of #TFMRAwarenessday
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 contact@soft.org.uk
For support, contact support@soft.org.uk
To find out more, visit www.soft.org.uk
Breaking the Silence: Deaf Awareness Week (living with trisomy)
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 Our Own Little Bubble: Coping with TFMR - Marie's Story
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 contact@soft.org.uk
For support, contact support@soft.org.uk
To find out more, visit www.soft.org.uk
In Conversation With Richard: A Siblings Journey
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@soft.org.uk
For support, contact support@soft.org.uk
To find out more, visit www.soft.org.uk
In Conversation With Sarah: A Mosaic Pregnancy and Journey (Living with trisomy)
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
Working With Eastenders
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 more, visit www.soft.org.uk
With The Benefits of Hindsight (Bereavement)
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
Introducing Sarah: SOFT UK Trisomy Advocate
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
SOFT UK: Royal Parks Half Marathon Discussion (Fundraising)
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
Can HIV Cause Trisomy 18 Edwards Syndrome
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 out to our professional adviser for comment and also speak with one of our support volunteers regarding her experience. Today’s podcast is a roundtable discussion on the subject of the EastEnders HIV storyline.
We’re joined by Nora Shannon and Laura Petrie to discuss this topic and clear up any confusion that has arisen.
If you have a story to share please reach out to contact@soft.org.uk
If you need support, please get in contact with support@soft.org.uk
For more information, visit www.soft.org.uk
Song: Mellow Music by: CreatorMix.com
Fiona’s Story (Living with trisomy)
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 a very proud father.
To share your story, get in touch at: contact@soft.org.uk
To reach out to our support team, contact: support@soft.org.uk
To find out more about SOFT UK, visit: www.soft.org.uk
Song: Mellow
Music by: CreatorMix.com
What is Rare Disease day?
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 at contact@soft.org.uk
Song: Mellow
Music by: CreatorMix.com
Introduction to a Professional Advisor: Jenny Hudson
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
Introduction to a Professional Advisor: Jenny Hudson
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.
In Conversation With Charlotte Pt 2: Rainbow Baby
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 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
Instagram: https://www.instagram.com/soft_uk/
Twitter: http://twitter.com/soft_uk
Music: Precious Memories by Shane Ivers - https://www.silvermansound.com
In Conversation With Becky: After a Loss (Bereavement)
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
Instagram: https://www.instagram.com/soft_uk/
Twitter: http://twitter.com/soft_uk
Music: Precious Memories by Shane Ivers - https://www.silvermansound.com
In Conversation With Charlotte (Bereavement)
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.org.uk
Facebook: http://www.facebook.com/SOFTUK
Instagram: https://www.instagram.com/soft_uk/
Twitter: http://twitter.com/soft_uk
Music: Precious Memories by Shane Ivers - https://www.silvermansound.com
In Conversation With Lauren: A Siblings Perspective
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 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
Instagram: https://www.instagram.com/soft_uk/
Twitter: http://twitter.com/soft_uk
Music: Precious Memories by Shane Ivers - https://www.silvermansound.com
In Conversation With Becky: Thin Places (Bereavement)
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.uk
Facebook: http://www.facebook.com/SOFTUK
Instagram: https://www.instagram.com/soft_uk/
Twitter: http://twitter.com/soft_uk
In Conversation With Paul: A Dads Perspective (Dads/ TFMR)
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: contact@soft.org.uk
To connect with SOFT UK, please visit our pages:
Website: www.soft.org.uk
Facebook: http://www.facebook.com/SOFTUK
Instagram: https://www.instagram.com/soft_uk/
Twitter: http://twitter.com/soft_uk
#softuk #TFMR #podcast #Trisomy13 #PatausSyndrome #babyloss #Dadsperspective
In Conversation With Sandeep: A fathers perspective of Trisomy 13 (Bereavement)
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 account by a Dad and so enlightening to hear his perspective on things.
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
Instagram: https://www.instagram.com/soft_uk/
Twitter: http://twitter.com/soft_uk
A siblings perspective of Trisomy
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 other children.
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
Instagram: https://www.instagram.com/soft_uk/
Twitter: http://twitter.com/soft_uk
Fundraising With The Flock: Flockmass
Listen to this upbeat chat about the first gaming fundraiser done for SOFT, late last year. We discuss the group that took on the challenge; plus all the people involved in making the event a success. A really unique and fun fundraiser that ended up over achieving the set target.
To find out more about The Fock head over to: https://www.twitch.tv/team/theflock
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
Instagram: https://www.instagram.com/soft_uk/
Twitter: http://twitter.com/soft_uk
Trisomy Awareness Month: Empowering Hope (Living with trisomy)
We spoke to an amazing couple, Sarita and Kareem Edwards about their incredible 5 year old son, Elijah with full Trisomy 18. It's an inspirational way to end off #TrisomyAwarenessMonth as he is so well for a child with this condition. The podcast includes an endearing guest appearance by Elijah himself. It's also a wonderful opportunity to hear from a Dad when we discussed how this diagnosis affected them as a couple. It's all summed up with their message of hope and love at the end.
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
Instagram: https://www.instagram.com/soft_uk/
Twitter: http://twitter.com/soft_uk
Trisomy Awareness Month: Talking with Gareth, a trustee and fathers perspective (Bereavement)
This conversation with Gareth is an important one, as we hear how Dads can be affected by baby loss. His daughter, Phoebe, lived for 3 days and he found it terribly difficult to deal with at the time. His involvement with SOFT began by running sponsored races to raise funds for SOFT and has evolved to him 'meeting and greeting' people at SOFT conferences and now as a Trustee. We value his involvement and it's interesting to hear how SOFT has changed in the time he has been involved.
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
Instagram: https://www.instagram.com/soft_uk/
Twitter: http://twitter.com/soft_uk
Trisomy Awareness Month: Talking with Juliette, a trustee and volunteer perspective (Bereavement)
We spoke to Juliette about her personal journey with her daughter, Amelia, who had Trisomy 18. It's touching to hear how she has both relied on SOFT for support and now provides it as a support volunteer and trained bereavement counsellor. It's truly a labour of love for the Bradley family, as Juliette's husband, Matt, helps SOFT with their website and IT.
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
Instagram: https://www.instagram.com/soft_uk/
Twitter: http://twitter.com/soft_uk
Trisomy Awareness Month: Interview with Jenny Robbins, a founder of SOFT UK
Listen to this informative chat with Jenny Robbins, founding member of SOFT UK. We heard the fascinating story of how SOFT was started back in the 1980s in the context of limited/ outdated information on Trisomy 13 and 18. Listening to how connections were made locally and overseas with other families with Trisomy 13 and 18 babies and children, through surveys and letters, was so interesting. We found out about the very first conferences and how the support that SOFT offers has changed with the advent of technology.
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
Instagram: https://www.instagram.com/soft_uk/
Twitter: http://twitter.com/soft_uk
Trisomy Awareness Month: Verity's Village (Living with trisomy)
We had a catch up with Beverly Jacobson in the States to hear how her daughter Verity, with Trisomy 18 is; what's new with Verity's Village since we last spoke and how the launch of her book 'From Diagnosis to Delivery' is doing as well as what her plans for Trisomy Awareness month are. We also shared all the exciting things SOFT UK have planned for the month of March to celebrate #TrisomyAwarenessMonth.
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
Instagram: https://www.instagram.com/soft_uk/
Twitter: http://twitter.com/soft_uk
The Right Choice for You: Emma's Story (TFMR)
As part of our Ended Pregnancies series of podcast, 'The Right Choice For You' we spoke to Emma Belle, mum to Willow and founder of support group, TFMR Mamas, . She spoke openly about their IVF journey, and how they heartbreakingly discovered that the baby she was carrying had Trisomy 18. Listen to her powerful message at the end about finding safe spaces to express yourself and find support.
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
Instagram: https://www.instagram.com/soft_uk/
Twitter: http://twitter.com/soft_uk
Bereavement: Other Peoples Reactions
Today we talk about the difficult subject of how other people handle the loss of your baby. Hannah shares some of the strange things that people have said to her, sometimes out of panic as they don't know what else to say, and the impact that this had on her.
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
Instagram: https://www.instagram.com/soft_uk/
Twitter: http://twitter.com/soft_uk
Bereavement: The Impact on Relationships
In this podcast we spoke with Hannah. We discussed what impact losing her son Cillian had on Hannah's marriage and other significant relationships in her life. It was interesting to hear how she has changed as a person and how this has had an effect on others around her.
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
Instagram: https://www.instagram.com/soft_uk/
Twitter: http://twitter.com/soft_uk
Bereavement: Ways of coping
We spoke to Hannah about some of the coping mechanisms she has developed since losing her son Cillian. Some are the usual things we've all heard of before, but one is rather unusual and was even surprising to her.
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
Instagram: https://www.instagram.com/soft_uk/
Twitter: http://twitter.com/soft_uk
Bereavement: Chloe's Story
We spoke to Chloe about her daughter, Penelope, whose Trisomy 18 diagnosis was missed during pregnancy, but who lived for 2,5 years. The months and years that followed her loss were extremely tough and there were times when she didn't know how she or her husband would make it through. She bravely explains how she has since been diagnosed with Complex PTSD and is seeking help with a psychologist. Hear more about her journey and what she has done for SOFT UK in Northern Ireland.
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
Instagram: https://www.instagram.com/soft_uk/
Twitter: http://twitter.com/soft_uk
Bereavement: Loss During Lockdown
We spoke to Hannah about the difficulties of experiencing loss during lockdown and how she managed to plan her baby's funeral despite all the restrictions. She speaks beautifully about the ways in which they still made the event special and kept traditions that meant a lot to their family.
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
Instagram: https://www.instagram.com/soft_uk/
Twitter: http://twitter.com/soft_uk
Bereavement: Hannah's Story
We spoke to Hannah O'Gallachoir about her antenatal diagnosis of baby Cillian's condition, Trisomy 13. We discussed how she found out about SOFT and why she loves volunteering for us as a support volunteer. Hear more about her journey as well as her message for other bereaved families.
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
Instagram: https://www.instagram.com/soft_uk/
Twitter: http://twitter.com/soft_uk
Against All Odds: Helen's Story (Expectant parent)
Helen is expecting a baby girl with Trisomy 18 and she joins us for a podcast conversation as part of our 'Against All Odds' series. We chat about the journey through diagnosis, their uncertainty around continuing the pregnancy or not, as well as the added complications of having older children already. We also hear how joining the monthly SOFT support calls helped to normalise some of the feelings she was experiencing.
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
Instagram: https://www.instagram.com/soft_uk/
Twitter: http://twitter.com/soft_uk
The Right Choice for You: Naomi's Story (TFMR)
Naomi’s story is the 3rd one in the ended pregnancy series, ‘The Right Choice for You’. She was very open about her experience, from discovering the issues, to the end of the journey including funeral arrangements. She felt it was important to tell her story as there were no others around like it when she was going through the same thing.
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
Instagram: https://www.instagram.com/soft_uk/
Twitter: http://twitter.com/soft_uk
The Right Choice for You: Rachel's Story (TFMR)
The next podcast in the ended pregnancy series, ‘The Right Choice for You’, is with Rachel, who was a first time Mum when she discovered problems during the routine screening offered during pregnancy. She tells us how she came to the decision and what impact that has had on her life since.)
The Right Choice for You: Caroline's Story (TFMR)
Today’s podcast is the first in our ended pregnancy series called ‘The Right Choice for You’. It’s a very open and brave conversation with Caroline, who discusses all the considerations in making the extremely difficult decision to end her pregnancy. We hear about the emotions and thoughts she experienced afterwards and how she has coped over since losing her son, 7 years ago.
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
Instagram: https://www.instagram.com/soft_uk/
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Against All Odds: Chelsea's Fundraising
This podcast was an interview with Chelsea Fenwick who undertook fundraising in memory of her daughter Esme. She managed to raise £10 000 and we hear more about her journey with her beautiful daughter and some of the milestones they shared along the way.
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
Instagram: https://www.instagram.com/soft_uk/
Twitter: http://twitter.com/soft_uk
Against All Odds: Leo's Fundraising Walk Around the World
We chat to Mum, Lucinda about her fundraising walk for her son, Leo. As well as another fundraiser that was set up at very short notice by an amazing organisation. She also updates us on the progress made with finding a treatment for his ultra rare condition.
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
Instagram: https://www.instagram.com/soft_uk/
Twitter: http://twitter.com/soft_uk