SOFT UK
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In Conversation With Together For Short Lives
In todays episode we are talking with Dr Helena Dunbar, Director of Service Development and Improvement at Together For Short Lives.
Take a peak behind the scenes and find out a little bit more about the projects and initiatives Together For Short Lives are working on.
For Together For Short Lives:
www.togetherforshortlives.org.uk/
For SOFT UK:
Reach out at contact@soft.org.uk
For support, contact support@soft.org.uk
To find out more, visit www.soft.org.uk
มุมมอง: 78

วีดีโอ

SOFT UK Scotland Family Day: Moments of Reflection
มุมมอง 11ปีที่แล้ว
In this session, Laura will be leading our remembrance ceremony, joined by some fantastic art created by the children who attended the day. The SOFT UK Family day was made possible by the National Lottery Community Fund who kindly sponsored the event.
SOFT UK Scotland Family Day: An Update on Ayla
มุมมอง 17ปีที่แล้ว
In this session Caroline Johnston will give us an update on Ayla. The SOFT UK Family day was made possible by the National Lottery Community Fund who kindly sponsored the event.
SOFT UK Scotland Family Day: A Time Of Reflection
มุมมอง 6ปีที่แล้ว
In this session Carolyn and Robin Cockburn will give us an update now Ellie has turned 18 and moved into her own accommodation The SOFT UK Family day was made possible by the National Lottery Community Fund who kindly sponsored the event.
SOFT UK Scotland Family Day: Una MacFadyen and Nadia Bowley
มุมมอง 17ปีที่แล้ว
In this session we hear from Una MacFadyen and Nadia Bowley who will be updating us on the projects they are working on. The SOFT UK Family day was made possible by the National Lottery Community Fund who kindly sponsored the event.
SOFT UK Scotland Family Day: An update of the work of ARC in Scotland
มุมมอง 5ปีที่แล้ว
In this session we are delighted to welcome Karen McIntosh, Scottish Co-ordinator, Antenatal Results & Choices - ARC The SOFT UK Family day was made possible by the National Lottery Community Fund who kindly sponsored the event. You can find out more about ARC here: www.arc-uk.org/
SOFT UK Scotland Family Day: Introduction
มุมมอง 18ปีที่แล้ว
In this session members from SOFT UK will be introducing the day and giving an update on SOFT UK from the past 18 months. You'll hear from our Trustees, Liz Egan and Laura Petrie, our Charity Director, Shaun Dowdall, and our Trisomy Advocate, Sarah Bowell. The SOFT UK Family day was made possible by the National Lottery Community Fund who kindly sponsored the event.
Baby Loss Awareness Week 2023: In Conversation with Kate Sonley
มุมมอง 25ปีที่แล้ว
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 contact@soft.org.uk For support, contact support@soft.org.uk To find out more, visit www.soft.org.uk
From Past To Present: Reflecting on Demi's Trisomy 18 Journey
มุมมอง 35ปีที่แล้ว
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 www.eventbrite.co.uk/e/scottish-soft-fa...
Embracing the Extraordinary Journey: Positive about Down syndrome
มุมมอง 31ปีที่แล้ว
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: downsyndromeuk.co.uk/ Reach out at conta...
Pregnancy after a Trisomy 18 diagnosis
มุมมอง 751ปีที่แล้ว
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 abou...
Leaving the hospital with my Rainbow baby
มุมมอง 127ปีที่แล้ว
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...
A Sibling's Path: From Loss to Strength as a Rainbow Baby
มุมมอง 136ปีที่แล้ว
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 optim...
Navigating the Complexities of Genetic Counseling: Insights from a Trainee Genetic Counselor
มุมมอง 135ปีที่แล้ว
Navigating the Complexities of Genetic Counseling: Insights from a Trainee Genetic Counselor
Siblings Talk: Having a Sibling With Trisomy 18
มุมมอง 139ปีที่แล้ว
Siblings Talk: Having a Sibling With Trisomy 18
Jenny Hudson - Chiropractor, IBCLC, Infant Massage Teacher
มุมมอง 44ปีที่แล้ว
Jenny Hudson - Chiropractor, IBCLC, Infant Massage Teacher
SOFT UK Family Day: A Year in Reflection
มุมมอง 99ปีที่แล้ว
SOFT UK Family Day: A Year in Reflection
Making a Difference: The Power of Volunteering with SOFT UK
มุมมอง 27ปีที่แล้ว
Making a Difference: The Power of Volunteering with SOFT UK
10K Steps a Day: Getting Half Marathon Fit
มุมมอง 129ปีที่แล้ว
10K Steps a Day: Getting Half Marathon Fit
Trisomy 13 Story: Improve, Inspire, Empower (Bereaved)
มุมมอง 4.9Kปีที่แล้ว
Trisomy 13 Story: Improve, Inspire, Empower (Bereaved)
SOFT UK: Anticipatory Grief - A Parents Experience During and Beyond Pregnancy
มุมมอง 61ปีที่แล้ว
SOFT UK: Anticipatory Grief - A Parents Experience During and Beyond Pregnancy
Breaking the Silence: Deaf Awareness Week and Trisomy 18
มุมมอง 48ปีที่แล้ว
Breaking the Silence: Deaf Awareness Week and Trisomy 18
In Our Own Little Bubble: Coping with TFMR - Marie's Story
มุมมอง 60ปีที่แล้ว
In Our Own Little Bubble: Coping with TFMR - Marie's Story
Our Story With Edwards' Syndrome
มุมมอง 905ปีที่แล้ว
Our Story With Edwards' Syndrome
In Conversation With Sarah: A Mosaic Pregnancy and Journey
มุมมอง 45ปีที่แล้ว
In Conversation With Sarah: A Mosaic Pregnancy and Journey
SOFT UK: Royal Parks Half Marathon Discussion
มุมมอง 35ปีที่แล้ว
SOFT UK: Royal Parks Half Marathon Discussion
Fiona's Story
มุมมอง 51ปีที่แล้ว
Fiona's Story
Can HIV Cause Trisomy 18 Edwards Syndrome
มุมมอง 65ปีที่แล้ว
Can HIV Cause Trisomy 18 Edwards Syndrome
The Importance of Support
มุมมอง 202 ปีที่แล้ว
The Importance of Support
Introduction to a Professional Advisor: Jenny Hudson
มุมมอง 152 ปีที่แล้ว
Introduction to a Professional Advisor: Jenny Hudson

ความคิดเห็น

  • @Icecream64
    @Icecream64 หลายเดือนก่อน

    As a sibling of someone who had Trisomny-18, it’s nice to finally see something from our point of view. Is there any information for siblings who are carriers looking to get pregnant? Every woman in my family who is a carrier has had a Trisomny pregnancy. I’m a carrier as well, and I don’t know what to do.

  • @lwendt6812
    @lwendt6812 4 หลายเดือนก่อน

    Thank you for this video! This is a treasure. Wish every hospital in the world could watch this!

  • @betsyfaircloth334
    @betsyfaircloth334 5 หลายเดือนก่อน

    sry for your loss

  • @SandraPerez-ff9zs
    @SandraPerez-ff9zs 10 หลายเดือนก่อน

    Si se ríen es porque se salva

  • @SandraPerez-ff9zs
    @SandraPerez-ff9zs 10 หลายเดือนก่อน

    Pobre niño tanta cosa que le ponen ojalá sea para que se salve sino puro sufrimiento

  • @wyliee2
    @wyliee2 11 หลายเดือนก่อน

    My husband and I are doing IVF treatment and we just received our PGT testing results. Unfortunately the baby girl embryo is positive for high-level mosaic trisomy 13. And our little boy embryo is low level dup(17)(q24.2-qter) (mos). We will be speaking with the genetic testing team on Friday. Hopefully we will get positive positive news about transferring the boy embryo.

  • @abibatukamara9534
    @abibatukamara9534 ปีที่แล้ว

    Similar story with mine

  • @abibatukamara9534
    @abibatukamara9534 ปีที่แล้ว

    I have a daughter with Trisomy 13 Happy to see this video

  • @absies34
    @absies34 ปีที่แล้ว

    I’m so grateful to have stumbled across this story. Helps me feel less alone in my very specific kind of grief. I miss “feeding” my baby too. Hiraya Ahsoka Gatchalian-Raga also was a Trisomy 13 baby, but now she’s free. I imagine her playing with our dog Chewy in heaven who passed shortly after her. 🥹🥰🤍

  • @sahalaura8391
    @sahalaura8391 ปีที่แล้ว

    I'm wondering if knowing before she was born would have given you the chance to research and get some more scans would have helped. Our granddaughter has Down Syndrome which is Trisomy 21. We knew the diagnosis ahead of time. My son and daughter in law had time to know what the options were. Thank God she's a healthy little girl.

  • @sahalaura8391
    @sahalaura8391 ปีที่แล้ว

    Oh I'm so sorry! I'm glad you got to be with her until the end.

  • @Emptynestballerina1
    @Emptynestballerina1 ปีที่แล้ว

    Why blame the doctors for your burden

  • @maegardnermills4292
    @maegardnermills4292 ปีที่แล้ว

    So sadden for the children who suffer and die. My Down's fetus was removed from me nearly 36 years ago. Ten years earlier, our first born live two minutes from six hours old. Premature. Respiratory Distress Syndrome. We have two living adult children. Heartaches aren't every day. I ask my baby boys to spend the night. Whatever gives you comfort, do it. When I was in my mom to be at 4 months, my eggs in me were my gifts for the four I had later on. Grandma , mother, and her baby. It truly is a SACRED WOMB. Hysterectomy was removed because of cancer, but my nuturing never ends.

  • @BeeApple-sr3db
    @BeeApple-sr3db ปีที่แล้ว

    I am so sorry for your loss. It is very hard losing a child. Your little girl is an Angel now she is flying high in Heaven. ❤❤❤❤❤❤

  • @cochiefemeralds3616
    @cochiefemeralds3616 ปีที่แล้ว

    I have a friend with Trisomy 18 (Edwards Syndrome) and she is 28 rn.

  • @carlottaallen939
    @carlottaallen939 ปีที่แล้ว

    I had a daughter with t18, 13.15 chromosomal 21, and I have never been the same, I had a son afterwards and I was so worried that he was going to have a health issue, but with the Kirds Grace he was just fine, my heart ❤️ is with you,

  • @np100
    @np100 ปีที่แล้ว

    Did you get amniocentisis?

  • @karenashton5053
    @karenashton5053 ปีที่แล้ว

    My daughter 34 has partial trisomy 13 and lives fairly normally. She is actually a unicorn with a college degree so we are lucky.

    • @H_Jones
      @H_Jones ปีที่แล้ว

      This is beautiful to hear ❤

  • @latishaburress5615
    @latishaburress5615 ปีที่แล้ว

    Done I am so sorry for your lost prayer

  • @erinnsixkiller2794
    @erinnsixkiller2794 ปีที่แล้ว

    To Isabel’s mom, you have a beautiful happy loving family. Thank you for sharing your story with the world.

  • @davidcopperfield-DickensBook
    @davidcopperfield-DickensBook ปีที่แล้ว

    So very sad you lost your little girl.....

  • @InternationalGrace
    @InternationalGrace ปีที่แล้ว

    Have you had any blood test prior to baby delivery? I would like to know test will miss it?

    • @alyciamarie4163
      @alyciamarie4163 ปีที่แล้ว

      There are tests. I had to do many and many specialists before I was told it was triploidy, which is 3 of every single chromosome. I was told there is no chance at life and they would do “ no life saving work” to help her when born…

    • @InternationalGrace
      @InternationalGrace ปีที่แล้ว

      @@alyciamarie4163 Thank you so much for information

  • @charlenehermione6509
    @charlenehermione6509 ปีที่แล้ว

    I have been dealing with HIV for the past 5 years until i got review on TH-cam about #drabiola and I got Dr Abiola herbal medicine last month, now I am free from HIV #drabiola 🥰....

  • @njsmkmmsthatsit3518
    @njsmkmmsthatsit3518 ปีที่แล้ว

    I think most of the time Dr's in hospitals have their own agenda when these kids are diagnosed. They don't want them to be a drain on the health care system because often they do have lots of health issues. They don't want the parents to have the strain on all of the families relationships etc. However it's not up to the Drs to make the ultimate choice. They need to give the parents the All of the available information to make their own choice for their child. I think it's medical negligence on a massive scale for parents to be led to believe there is no hope what so ever. Also Dr's cannot predict before birth all of the issues the child is going to have, how severe these problems will be or the IQ of the child. Yet before birth the Dr's do give the option to abort the child, when they don't know for sure whats wrong.

    • @jrahn66
      @jrahn66 ปีที่แล้ว

      I agree with you. Hospitals are really killing fields for a lot of folks and their families.

    • @virginiaconnor8350
      @virginiaconnor8350 ปีที่แล้ว

      Not wanting to help babies with disabilities live reminds me of the eugenic practise of eliminating "imperfect" babies. I remember that my parents were told to leave me behind in an institution in Germany where I was born. An American told them not to do so and give me thyroid. They did and to make a long story short, I graduated from GSU in '87 with a BA in Art.

  • @radpenguin44_
    @radpenguin44_ 2 ปีที่แล้ว

    Good animation

  • @radpenguin44_
    @radpenguin44_ 2 ปีที่แล้ว

    Underrated video

  • @kylesims7790
    @kylesims7790 2 ปีที่แล้ว

    ✌️ 𝐩яⓞ𝓂𝓞Ş𝐦

  • @jenniferwells9032
    @jenniferwells9032 2 ปีที่แล้ว

    I love you parents ♥️♥️♥️you are all so brave 🥲🥲🙏💜🥰

  • @joyceeleanor2
    @joyceeleanor2 2 ปีที่แล้ว

    How sad and devastating to the family! I wonder if the syndrome can be diagnosed while in utero? Hugs from me.

    • @prachisawhney1105
      @prachisawhney1105 2 ปีที่แล้ว

      True

    • @prachisawhney1105
      @prachisawhney1105 2 ปีที่แล้ว

      I also lost my girl from some other syndrome I wish it colud detect in utero

    • @njsmkmmsthatsit3518
      @njsmkmmsthatsit3518 ปีที่แล้ว

      Yes it can be diagnosed in utero.

    • @mcgheebentle1958
      @mcgheebentle1958 ปีที่แล้ว

      While neonatal tests and screenings for this and other chromosomal abnormalities do exist and are commonly given, it is worth noting that their accuracy is not incredibly high. Depending on the particular test or screening, the accuracy rate can be as low as 65-70 percent. I know three mothers that were all given a positive diagnosis for some chromosomal abnormality in utero but gave birth to children without any problems at all. So while yes, these tests do exist, I would like for the medical community to be more transparent about the accuracy of these screenings… people can make irreversible and life-altering decisions based on an in utero diagnosis that may or may not be true. I have never been pregnant, but when I start getting pregnant I will personally be refusing all tests and screenings. I know many younger mothers that are also choosing the same path.

  • @sabriarolle3394
    @sabriarolle3394 3 ปีที่แล้ว

    I lost my son with the same syndrome. I agree with you to a great deal. Softer words when delivering this type of news. I thank GOD for allowing us the time with my son.

  • @thecancelling2870
    @thecancelling2870 3 ปีที่แล้ว

    Good parents

  • @marizeteroncete70
    @marizeteroncete70 3 ปีที่แล้ว

    I have a Daughter she is 26 years old. She is a lovely girl and she walks by her self. We lived in Brasil.

  • @carolinejohnstone6509
    @carolinejohnstone6509 3 ปีที่แล้ว

    Great to refresh my understanding of your work. Thanks for your continued support of our children

  • @209illusion
    @209illusion 3 ปีที่แล้ว

    Im sorry for your loss, I too lost a baby to this T13. I understand your pain. Thank you for your story. The stress this brings to you is beyond words. I grieve for the loss of my child and the loss of my relationship with my wife due to this T13. I caused us so much pain it broke us apart.

  • @helentarratt7222
    @helentarratt7222 3 ปีที่แล้ว

    I qualified as an RGN in 1991 at Wycombe - I remember the consultant fondly - he was brilliant so was the other one but there was something very special about him it was a huge loss to paediatrics when he died. Interesting to hear about Saskia’s early years !