Your love, prayers and support have helped to hold us together these past few weeks and we thank you all. However, it is with the heaviest of hearts that I have to tell you that our beautiful, brave and handsome boy is slipping away. There is nothing now that can be done for him. All that remains is for us to decide when to withdraw and to let him go. There is of course hope, but it is only that, and we are at peace with this.

He has fought the greatest of battles and it is up to him now to leave on his own terms.

Thank you all so, so much for your love.

77 thoughts on “Update

  1. Vicki

    I think I speak for all of us when I say we are all here & will be for as long as you want us. I pray for you all xxxx

  2. Lizzie

    Still praying still with you still hoping. Now adding prayers for peace and wisdom for you and Clare. So much love from here To you Ned and to your wonderful parents too. Xxxx

  3. Fran and Malc

    Our sadness cannot be put into words. Our hearts go out to you all and we send all our thoughts and love.
    Fran and Malc xx

  4. Sally and John

    We have grown to love and know little Ned and and through him we have met an incredible family. He is lucky he chose you for his life. We are thinking about him all the time and send send you all love and strength.

  5. felicity cannon

    Praying for a miracle for beautiful Ned. I’ve spent all morning reading the blog. What an amazing family he has. And thank you for sharing the most difficult time of your lives with us all. So much respect for you. Love and positive thoughts sent from another Hlhs family. Xxxxx

  6. Sarah Watson

    Our thoughts, prayers and love to you all – and specially to sweet Edward.
    Sarah, Matt, Em and Thomas Watson

  7. Emma Urquhart

    You are all in our hearts, minds and prayers, words cannot express how we feel. Emma, James, Izzy and Millie xxxx

  8. Sally Otter

    We send all our love and are thinking of you – I simply can’t put into words what we all feel for you. Sally, Jon, Olive and Bert xxxxxxxxx

  9. Ruth & Roger

    Our hearts go out to you. Ned has been fighting the bravest of battles with the bravest most wonderful parents and family with him all the way. We are praying for you all as ever and send our love. Xx

  10. A friend from FUFs

    I’ve followed your story having known you all from toddler group. I’m lost for words as to the incredible sadness and heartache you must be going through, I think I’m safe to say that our town of Cirencester have been routing for you all to come through this as unscathed as is possible. Much love x

  11. Norma

    Clare , Andy ;
    You are and have been the most courageous and inspirational parents; of course you were given no choice in this matter. You had prepared Edward so well for this operation; and Arthur and Alice. An unenviable task.
    Never could you of loved and supported Edward more, through all this ordeal.
    Clinging on with our hope. Yet, acknowledge his most difficult struggle.
    As his parents, you love and know him above all; with utmost sadness and respect I have read your update and thank you so much for that. Relief you have found peace.
    Sending love to Edward, yourselves, Arthur and Alice, and all your family. You will all stay in my thoughts and heart. Norma xxx

  12. Wendy Fairbairn

    Your messages are hard to read so I can’t imaging what you must be going though. Ned couldn’t have wished for better parents. Like you, I will cling to hope that we will see your lovely boy again.

    Love Wendy and Katie

  13. Natalie Baird-Clarke

    Ned – you have made a little imprint on my heart. Praying so hard for you now, and for Mummy, Daddy, Alice & Arthur.
    All our love,
    Natalie & Isabella xxx

  14. Sally Edgington

    It is with much sorrow that I have read your latest update Andy and our thoughts are with you at this incredibly sad time. Ned has been a wonderfully brave little boy who has taught you and Clare so much. I know Ned will be sorely missed but never forgotten by all who have been touched by him. I know I haven’t seen you since you left school with Tony (my brother as you won’t recognise my married name) but my thoughts have been with you so much over the last couple of weeks. Please try to take strength from all the good memories you have of Ned and know that you and Clare couldn’t have been better parents to him, you truely gave him so much love and support throughout his short life. God bless you all and give you the strength you will continue to need. xx

  15. tamsin hawkins

    words are not enough at a time like this but we still want to let you know you are constantly in our thoughts.we are praying for you all. clare and andy,you are both the most amazing parents and could not have done more. ned has touched us all
    love tamsinx

  16. Mike and Phil Hayton

    You are constantly in our thoughts at this difficult time
    The care and love you all have for Ned is truly amazing
    We are all here for you
    Mike and Phil

  17. Catherine vogelenzang

    If we could do anything to ease your pain,we would. We send you our love and our promise to continue to pray and still to have hope. Ned is a wonder of a boy, a treasure, a blessing to you and we send our love. Xx

  18. Geraldine Craig

    You are always in our prayers and thoughts. God bless dear little Ned. God Bless you all.
    Geraldine, Dave and Hedley xxx

  19. Catherine

    As for so many others I cannot find the words to express the sadness. No parent should have to go through what you are experiencing at the moment – it all seems quite wrong – and yet you have shown such immense courage. To be giving Ned the dignity to decide his own destiny has surely been the most courageous and also the most loving step of all.
    I send my love to you both, to all your family, especially Alice, Arthur John, Jenny, Tom and my lovely friend Naomi, and of course above all to little Ned

  20. Emma Pete and Rosie

    Dear Clare and Andy, we send you so much love. To your precious Ned, we love you, always in our thoughts. Emma Pete and Rosie xxxx

  21. Jo

    I read with much sadness of all the events that have taken place in this last week. My thoughts and prayers are with you all. Keep strong, you are wonderful parents and have an amazingly strong little boy.

  22. Louise, Colin, Toby and Benjamin

    Dear Edward and all your loving family remain in our prayers and thoughts tonight x

  23. Emily Hamilton

    I am so sorry to read your latest update. We have been following your news and thinking of you all and Ned constantly and it is heartbreaking to read this. Our love and thoughts are with you.
    Emily, John, Ben and Alex xxx

  24. Diane Berry

    Of all the difficult days you have faced over the last two weeks you are now facing the most difficult of all. We are so so sorry and will be thinking about you constantly and sending love.
    Please kiss Edward for me.

  25. Victoria Elson

    I always struggle to understand why, after so much prayer this can still happen. Just have to trust The Lord know what he is doing and knows what is right and best for Edward. God bless you all, we won’t stop praying.

  26. A parent from fufs

    Im a parent of a daughter that goes to fufs and your courage as a family has touched my heart.I have been praying for you,Clare and Ned since the day of his first operation,I continue to pray for you all and send my love and hope,hope for a miracle ,which is possible..hope that you will feel the love that is being sent your way and that it will encompass you and Ned and you will continue to feel peace.
    Bless you all x

  27. Nick Davies

    Many, like me, will be finding it impossible to write. But anyone who’s ever read anything of Ned’s amazing story is preying for all of you right now. God bless.


  28. Steff, Dave, Bethany Jethro and Tirzah Kingsley

    Still praying for you all and especially Ned. We will not stop. Big hugs xxxxxxx

  29. sally spring

    Ned what an amazing tough little boy you are. Clare and Andy you have surrounded him with love. We all stand with you and send our love hope and friendship. How we wish for a miracle for darling Ned
    Sally Dave Ben and sam

  30. mike

    Whatever the outcome you have all shown so much courage you have been inspirational as parents
    Ned has shown that he is not going without a fight and as a family you are amazing.
    I am hoping with all my strength that since your last update some positive news has arrived. Neds army of supporters no doubt hoping for the same thing.
    If the horrendous decision does come your way you were obviously matched for a reason and that reason was love.


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