Communication Board

This final section is for you. My family and I would like to build up a noticeboard of comments and information from other parents. Hopefully together we can create a clear picture of what living with Edwards Syndrome entails, and what milestones these incredible children achieve. You can simply add comments on any issues or concerns, maybe add details of your child’s progress, discuss how you are feeling, ask questions or seek feedback from other parents in the chat room section.

You can leave your comments below each relevant page of this website. Thank you!

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36 thoughts on “Communication Board

  1. Hi Caroline and Sean

    I was so pleased to hear from Ian about your website for Cerys. I have enjoyed (doesn’t seem an appropriate word bearing in mind your loss) to read. Very informative, Intimate and heart warming. I was lucky enough to meet Cerys at the office in Welshpool and give her a little cuddle … It was lovely to see how she responded to soft words and rocking. Best wishes Carol x

  2. Hi Caroline and Sean,
    I and my daughter were the two ladies from SOFT UK who visited you. I retired from SOFT UK after the Family Weekend, and my daughter is now working as a doctor in Yeovil. Your website is a loving and lasting tribute to Cerys, and I wish you both much happiness in the future,
    Jenny xxx

  3. The site is very moving.
    Cerys would be very proud of your efforts to help others.
    What a wonderful legacy for her.
    xo Kat

  4. What a moving and beautifully written tribute to such a sweet little girl. Love and strength to Cerys’ parents and family

  5. Dear Caroline & Sean,
    We have just seen your amazing website, what a beautiful tribute to your darling little Cerys, and such a wonderful source of help for parents in the same situation. We treasure the times when we visited you and were able to cuddle Cerys and get to know her. We will never forget Cerys, she is still a part of our family, and always will be. With our love & hugs Sally & Fraser xxxxxx

  6. What a lovely and moving tribute to Cery from her loving family….. It has made me sad but happy to read about Cery… Thankyou and God Bless you all….

  7. A wonderful tribute to somebody who was clearly dearly loved, something Cerys enjoyed in her short life that so many others have to manage without for years on this earth. I have the greatest possible respect not only for Sean and Caroline but for everybody involved, especially those who made such a diffeeence whilst Cerys was alive. In times of econimic harsdhip, it is so heartening to be reminded of what we should really value in this world.

  8. It has been lovely to read more about Cerys and her family, I followed your journey on Twitter at the time and my thoughts are with you now as they were then.

  9. We met Cerys, Caroline and Sean in the early days in NICU at Southmead Hospital. It has been an honour to know you Cerys and you have been blessed with 2 of the best parents it is possible to have in Sean and Caroline.We know you would be so proud of them for putting together this website which will raise awareness of Edward’s syndrome and give other parents some comfort and support. You are such a little star and your light will always shine

  10. Thank you for sharing your story with all of us. By reading about Cery’s journey I feel like I got a chance to know your beautiful, feisty daughter. Cerys was full of spirit and gumption, and I am so happy that you got to spend those 16 amazing weeks getting to know her; showing her the world and showering her with love and affection. The website you have created in her memory is a wonderful gift to other parents. Thank you.

  11. Hi there, your website is fantastic, I am so sorry for your loss and thank you for taking the time to create such a loving resource in memory of your beautiful daughter. My cousin’s child has just been diagnosed with Edward’s and I am trying to find a parent who has gone through a similar experience who she could speak to to ask some advice to help her and her partner deal with what is happening in these early days and would appreciate if you could get back to me on e-mail. Many thanks, Katie x

  12. Dear Caroline and Sean

    What a wonderful tribute to such an amazing and beautiful baby girl – it was an absolute pleasure to know her and to meet such amazing parents. I don’t know I was much help… but what you and your parents taught me has given me something important and helpful. It has been such an honour knowing you all and I shall never forget Cerys, Caroline and Sean. Much love Francesca

  13. Hi Caroline and Shaun, I finally remembered to look up your website, which I think is so very special.

    After meeting you at the SOFT conference I couldn’t get Cerys off my mind, and was so devastated when I got your message saying she had passed.

    For all you others who visit this site, I can honestly say that the words of advice and encouragement that are within these pages brought pain and tears aplenty, and are written from a heart of gold.

    Our son William was born on 11th Feb 2006. The first few days we were numb, the next few weeks we were like babes ourselves, and the next few months were hell on earth….but we got through…and by miracle William is still with us, fighting fit and stronger than ever

    Like Caroline,Shaun and Cerys we want to share from our experience and support others embarking on or already on their journey. The journey never ends, and wherever you are on yours, don’t do it alone.

    We live in at the bottom of the country, near St Ives, but Mark and I are both Bristol born. We have, with the support of others set up a website, still in it’s infant stages, to support families in Cornwall which will eventually become a charity. There’s also a Facebook group which is called Parents Palliative Network-this is national and has proved to be a brilliant tool for networking and sharing useful tips, information and being able to talk to other parents who can understand loss at all levels, from pregnancy to diagnosis to death and beyond. These two internet support networks are not condition specific, though there are many parents who have/had children with Edward syndrome, and Aicardi syndrome as myself and one of the other ladies support families with these conditons on other support networks.

    Whatever your situation,social circumstances, faith, nationality or sexuality etc, you should seek support about your childs needs from the people who often know best-PARENTS. These days we often expect too much of the proffessionals, who are often too snowed under the weight of children born with complex health needs…..they can’t and don’t know everything, but the good ones will point you in the right directions. Apart from that you are now on your own, in a ‘foreign land’ where everything is new and confusing. People like Caroline, Sean, Jenny, Mark and myself have experienced and want to put what we’ve learned to good use, supported by those around us, supporting others.

    All the best Caroline and Sean, you are two amazing people. Stay strong, hope is much more than a dream. For in our hearts we want someone that is part of us to go on and make their mark in this world, leaving us behind as they reach for the stars, but sometimes it turns out they end up living beyond the stars and their radiance shines through time and their hearts, though not needed where they are, still impart love to those they left behind, imprinted indellibly on the hearts of the people they met whilst here

  14. Hi Caroline and Sean,

    Your website is such a beautiful tribute to a beautiful girl. Thank you so much for all the information you have provided and for sharing your story. My niece, born with Edwards’ Syndrome, is now 9 weeks old and her story is very similar to Cerys’. If you have any other advice you could offer my sister and her partner, I know it would be really helpful to be in touch with people who have gone through something similar.

    Thank you again,

    Cat xx

  15. Hello,
    I came across your web site quite by chance…
    The way that you have chosen to share your lovely Cerys’ life is just very touching and I am sure many have been moved by her life like myself. Also it will give hope and I focus that is positive despite that there are some very raw realities.
    The way you have taken time and obvious effort is wonderful.
    Thank you.

  16. Darling Cerys, it is a year since you left us and yet not one day goes by when we don’t think of you or talk about you. Memories of your courage, and that of your Mummy and Daddy, will stay with us always. So much has happened in a year and you have been instrumental in raising awareness of Edwards Syndrome and lending support to others in so many ways. Through you others will know they are not alone.
    God Bless You, Cerys. You are very much alive in our hearts and memories. With our love, Jan and Ben x

  17. I read about your beautiful little girl in the soft website which I’ve too joined. Our little girl has trisomy 13 (patau’s syndrome) and every part of your story really touched me so deeply as I feel it could be me writing it. Our little Mia is now 7 weeks old and like your little monkey, she too decided that she didn’t like her feeding tube and would pull it out and laugh at us! we have to finger feed her now as she has a cleft lip and palate. it gives me so much hope after reading about your little miracle that she will continue to defy the odds and the bias we too face due to her patau’s here in the UK. We have cardiologist appointments in Southampton next week but like you feel already they have made their decision just based on Mia’s trisomy! Thank you for sharing your story, i now don’t feel as I’m the only one facing an uncertain time ahead. Kim xx

    • Hi Kim

      I am so pleased to hear that you were able to find our website and that it has helped you. Mia sounds a fiesty one just like Cerys. Have you tried the Habermann feeder bottle at all? It didn’t work for us, but I know it is used in instances where babies have cleft lips/palates. You may also like to see what Closed Facebook groups are available. I know there are ones called Trisomy families etc, but am sure there are others relating to Patau’s Syndrome if you search for them. If you are able to join them, you will have access to lots of parents who can give you support and advice.

      I send you and Mia lots of love.

      Our children are such gifts.

      Caroline xx

  18. Hello Caroline
    What a beautiful website – I love the comments Cerys makes about you and how you have captured her personality.
    I do feel very sad though that in the SOFT UK newsletter you say you felt you had nothing to compare Cerys’ development with or to assess how well she was doing. I know exactly how that feels as when Saskia was born with full Edwards we had to get information from the States to find a child older than her who was surviving. Saskia has survived a great many years with Edwards Syndrome, as has another little girl not far from where we live – we would have been only to happy to support you and give you information – perhaps with your website and Trisomy 18-13supportuk we can slowly ensure that no parent has to face those early weeks of bewilderment alone.

    • Hi Heidi,

      It was lovely to meet both you and Saskia last year at the SOFT conference, and I do hope that you are both well. I did feel like we had access to little information, we were put in touch with Lizzie at the time (via a family contact), had we not had that, we wouldn’t have had anything. Hopefully, we can all start to change that, and enable families to communicate with one another directly to seek advice, support and information. I have also set up a closed facebook group called Edwards Syndrome Families UK, where I hope families can chat easily to one another, and as you say hopefully ensure that no parent has to face those early weeks of bewilderment alone.


  19. My daughter, Kayli, is 4 years old, and is living with Trisomy 18! We are in the USA. You can follow Kayli’s journey online at or on facebook at You are welcome to join other families who have a loved one with trisomy, at our website is under construction, but once it’s up you can contact us at

  20. I just happened to find your site about your beautiful daughter Cerys.
    How I wish that there had been something similar when our daughter, Emma was born in 1977.
    In those days we had to go to the Library to find information & if I hadn’t done Biology at school we wouldn’t have had a clue about chromosomes.
    How strange that Emma was also 16 weeks when she died.
    The Consultant did talk about us taking her home but it never happened.
    Luckily I have two healthy Sons but will never forget my little girl

    • Hi Mavis

      I am so sorry to hear about Emma. The information vaccum hasn’t improved much over the years, even with the internet most of what I found at the time covered the science around Edwards syndrome, but very little about the day to day practicalities. I hope this website can help bridge some of that gap.

      Caroline x

  21. Thank you for sharing such a deeply touching story about love. Every baby is precious and I am so glad you created this website that is serving as a lasting memorial for your daughter but also to raise awareness about this issue and provide inspiration for other parents.

  22. Hi
    What a beautiful tribute you have done, it brought tears to my eyes.
    I look at your daughter to see if she resembles mine as we have a similar story.

    I don’t want to write too much but would love if u could contact me.

  23. Hi
    My son sent a link to your website yesterday.
    Your daughter is absolutely beautiful & I understand completely what a blessing she will always be to you & your family.
    I lost my beautiful baby girl Sophie Elizabeth 10 years ago & our stories are similar in so many ways. Sophie lived for 13 weeks, 3 days at home with us & I will always feel blessed I am her mammy.
    I wish you peace as you continue with your story.
    Sharon Gorvett xx

    • Hi Sharon

      Thank you for your kind words and for taking the time to read Cerys’ story. Am sorry to hear about Sophie, am sure every day of those 13 weeks was precious with your beautiful girl. I have set up a closed Facebook Group called Edwards Syndrome Families UK if you would like to join, its somewhere where anyone affected by Edwards Syndrome can talk, listen and support one another.

      I wish you all the very best

      Caroline xx

  24. Hi I came across this very touching site by accident but very interesting .
    I had a little girl Emma born 8th may 1984 we were the only parents at the time with an Edwards Syndrome child, I can relate a lot with what happened with cerys Emma would not sleep if she did it was for only 5minutes (to Emma more like 8 hours because she was not active) saddly Emma died a couple of months before her 8th birthday 15th February 1992. She was so happy and always laughing xx I miss her so much. I have written a short story about Emmas first year of her life the doctors said it would help other future parents but nothing happened with it I have the origanal copy called Emma If I can get it to you and put it on here would be lovely xx thank you ang god bless all of you xx

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