A Hard Night

This is the first time in a few days that I have been able to sit by my son’s bed and take some time to write a proper update. The past 48 hours have been utterly surreal, and interspersed with periods of anguish, despair and joy. So much has happened since my last post and I will try to find the time to fill in the gaps, but right now I just want to tell you about Sunday night. I have had to think about it long and hard, as it is, by far, the most personal and emotional post I have yet written and I accept that it may not be appreciated by everyone.

Having had a day of relative stability, John and Jenny kindly offered to sit with Ned for a few hours so that Clare and I could have dinner together for the the first time in a while. We strolled down to Southbank and found ourselves a quirky little pizza place. We had just finished eating when Jenny called. Blood had been found in Ned’s stomach and his blood pressure had fallen. It was clear from Jenny’s tone of voice that this was serious. The walk back was torturous.

Upon arriving at PICU we were confronted by an awful scenario. Ned’s bed was surrounded by doctors, nurses and consultants with very grave faces. Although alarming, the blood in Ned’s stomach was secondary to what was happening to his blood pressure. It had dropped to 48/26 and was not responding to adrenaline, dopamine, milrinone or noradrenaline. Blood pressure that low cannot sustain life for very long. Ned was in very real danger.

The team had already contacted Great Ormond Street and The Brompton to enquire if they could help. Great Ormond Street in particular has a speciality in ECMO, which is essentially a complete organ bypass for life support, but it was felt that firstly, Ned’s condition was not suitable and, secondly, that he would not survive the ambulance journey. Ned’s only hope was a drug called vasopressin, which is extremely powerful and comes with significant side effects. However, we had no choice. If Ned was to have any chance of survival he would have to take it.

It was at this point that one of the nurses said, “If you would like a chaplain, now is the time to call him.” I looked at her in disbelief and asked simply, “Is it he that sick?”. “Yes”, came the reply.

Ever since Ned was born, I have never countenanced the idea that he might not make it. He is the strongest, most determined and gutsy child I have ever known. Even when he was seriously ill after his first surgery I turned down the opportunity to have a chaplain present because I refused to believe that he would give up but Jo and Thomas, two of the most senior doctors looking after him, explained that this was genuinely the last shot at sustaining life. If the vasopressin didn’t work, all that could be done would be to make our boy comfortable as his life slipped away. The vasopressin was administered and the chaplain was summoned.

There is nothing that can prepare you for a moment like this. Your child, lying helplessly in a hospital bed, on the verge of death, made even worse by the struggle endured by him since birth just to get to this point. My initial reaction was to give Ned a pep talk, to tell him to fight, whilst Clare focused on soothing and calming him. But we also had to consider the unthinkable and I briefly pleaded with him through tears not to leave us, crying quietly into his ear. However, I had to remind myself that this was about him, not us, and that if it was his time or if he had simply had enough it was our responsibility to let him go in peace with our permission, without the wails of crying loved ones and knowing that he had not ever let us down. Clare and I talked, hugged and cried, and agreed that he needed to know from us that it was ok not to fight anymore, no matter how desperately we wanted him to.

When the chaplain arrived, the medical team gave us some privacy and we all stood around Ned’s bed, holding his hands or stroking his head as he blessed him and asked for strength. I cannot recall a single word that the chaplain said. All I can remember is holding Ned’s hand against my cheek. I am not sure how we would have coped without John and Jenny, whose love and support are the backbone of our family. They comforted us and held us, all the while dealing with their own sadness and fears, the clear distress of one of their own children as well as the rapidly deteriorating heallth of a grandchild. I will be eternally grateful for everything they have done for us.

As soon as the chaplain left, the medical team were straight back in. They knew that the odds were poor but they were determined to give him the best possible chance. Once the vasopressin had been administered, it was topped up over the next couple of hours with blood, plasma and platelets as they fought desperately to keep Ned’s blood pressure up. Their dedication was, and remains, inspirational.

The first signs were not encouraging and it only just held above the danger zone. Amazingly, throughout the entire process, Ned was able to communicate with us by nodding or shaking his head. Occasionally, he would say something but it was hard to decipher due to the ventilator in his nose. One thing though was clear, he had no intention of giving up.

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A desperately ill Ned is comforted by Clare, who kept this position for almost 5 hours.

We waited for 5 hours for his blood pressure to reach a sustainable level, during which time Clare did not leave Ned’s side once whilst I paced up and down unable to keep still. I have no doubt that Clare’s presence played a huge role in sustaining Ned and by the time dawn broke his blood pressure was around 52/40, which was still dangerously low but it could sustain life.

In the morning, once Clare had at last taken a break, John and I set about entertaining Ned by reading books, telling stories and generally playing the fool. Whether or not it had anything to do with us, Ned’s blood pressure continued to rise and by lunchtime had reached 70/43.

As I write now, some two days later, Ned’s blood pressure is 87/43 – still quite low by normal standards but acceptable for a boy with a single ventricle heart. It is still being supported by a cocktail of drugs and our priority now is to reduce these slowly over the next few days and allow his body to fight the infection. He is still, by any definition, desperately ill and looks awful. His body is bloated and bruised, and his face is almost unrecognisable. But he is still here, still fighting. I am of course biased, but he is a very special boy.

We have now found out that the virus attacking Ned is staphylococcus, which is pretty common but can be very dangerous once it infects a wound and potentially disastrous for cardiac patients. Ned has an extremely virulent form and we have been told that he is only the fourth ever documented case for an HLHS child making it very hard for the medical team to draw on case studies. They have however, been miracle workers and my new found admiration of all things German remains intact.

We are now back to taking everything hour by hour, step by step. There is no prognosis and we can only hope that he continues to improve and that his blood pressure holds as we slowly reduce the cocktail of drugs that maintains it. His body needs time to fight this wretched infection, after which we can resume his recovery from the fontan surgery which has been put on hold for the past week.

It’s been a dark few days for sure but whilst we dare not think that we might be turning a corner, we can see just a little bit of hope.

Come on Ned.

70 thoughts on “A Hard Night

    1. Sally Spring

      To you all and especially wonderful Ned
      It seems such a long time since I met you all at FUFS, Claire was pregnant with twins, Alice went to Nursery with Ben and then Arthur and Edward were born. We prayed that Ned would be born alive and then the anxious wait after his first major op. Ned is a fighter and so are you both. I remember as I stoked his face whilst you were telling me about the this operation he would face, thinking fight little man and we will fight with you. You are all in my thoughts and I am praying that someone or something gives you strength to keep going and face whatever is next. Ned is surrounded by your love and we will do all we can to help you through these dark days. Sending you all my love…..

      Sally, Ben, Sam and Dave Spring

      Reply
  1. kate

    Wow Ned, what an amazing and strong loved little boy you are. Its wonderful to hear he has been communicating with you : )
    We’re all routing for you and praying that Ned will get stronger and stronger, hour by hour.

    BIG HUGE HUGS xxxx

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  2. Diane Berry

    Thank you a million thank yous for keeping us updated as we are all thinking of you constantly and sending positive thought s and heaps of love
    Diane & Bob Berry

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  3. Katie Tampkins

    Ned, precious boy, we have not and will not stop praying for you, for your complete healing and for strength for your amazing family. God bless you xxx

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  4. Steff Dave, Bethany Jethro and Tirzah Kingsley

    Wow Andy. Thank you for your incredible honesty. That is wonderful news that his blood pressure is improving. We were praying specifically for this last night. Still praying for precious Ned and you all.
    Come on Ned, don’t give up. xxxxxx

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  5. Vickie Holloway

    Amazing little boy, Ned you are a trooper, keep on fighting little one xxx Love to all, God bless x

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  6. Sarah Watson

    Constantly thinking of little Ned. So little and so strong. Met John at Roves farm – you are all such an incredible family. And Ned the most incredible of all.
    Love,
    The Watsons (Thomas’ family)

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  7. Emma Clothier

    I just feel that Lord Jesus is sending you peace and strenghth and his eternal love!
    Nedvis an amazingly strong boy and I am so sure he gets that from both of you! Keep believing and stay strong for the power of the lord is almighty and he can and will bring you All through this tough and dark time!
    God bless you all and Ned stay strong you know your not alone!! Xxxx
    Love and massive hugs from all of us in the Clothier house!! Xxxx

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  8. Pippa

    What an incredible boy. Keeping up hope and thinking of you constantly. Loads of love to you all. P,P,W & E Xx

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  9. Lisa, James, Olivia and William

    What a true fighter, and true to the german meaning of his name, strong as a boar. Continue Ned to make these important little steps. We are all willing, hoping and praying for your progress to continue.
    Xxxx

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  10. Judy & co

    Come on Ned indeed – and well done to all of you. So much to say but now is not the right time – it is the time for love, prayers and hope.
    Love to you all
    x x x x

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  11. James Whistler

    When we woke up this morning, raced to check the blog and found no update, we were worried to say the least so reading this has brought tears of joy. To have been in the position of having to accept that Ned may not want to fight, and to have been able to consider his feelings in that scenario as you did, is truly remarkable and speaks volumes of you and Clare, not just as parents but as human beings. Learning that he is conscious through some of this shocked me as I had assumed that he would not be. Andy, you write honestly and beautifully as always; it’s deeply humbling stuff.

    The wonderful news though, of course, is that Ned isn’t going anywhere – he clearly doesn’t want to.

    I wrote a comment on here some days ago about us all meeting up for a day out at some point, perhaps a year from now, looking back on this dark time and thinking about your journey through it as a family. It seemed a wonderful thing to focus on back then, before Ned’s condition deteriorated, but, my word, what a time we’re going to have now!

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  12. Val and David

    Andy, thank you for this update and the wonderful news that Ned is still fighting. It brought tears to my eyes. I can see where he gets this from as you and Clare have the same indomitable spirit and Jen and John have been, and will continue to be, a tower of strength. We will continue to hold Ned dear to our hearts and send him our love and prayers.

    Lots of love to the whole family,

    Val and David xxxxx

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  13. Jane

    Well that’s done it for any dry eyes left – if there is anyone out there who has not already shed tears.
    Thank you for sharing with us, it does help focus our thoughts and prayers.
    What strength you all have; it is clear to see where Ned gets his from.
    More love…..
    Jane
    xxxx

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  14. jo Harvey

    I saw your blog on my friend’s wall. I read your words and so hard to read with tears in my eyes. I am praying for you all and I am sending Ned my healing love. The power of thoughts is incredible. What an amazing boy . Thinking of you all XXXXXX Love Jo XXXXXXXXXXXXX

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  15. Judith and Vincent Green

    Thank you for sharing with us all. It is very humbling to witness your raw emotions.
    We have some understanding of what you are going through and remember what comfort we gained from the huge tide of love which resulted.
    May it continue to sustain you all.
    With much love
    Judith and Vincent Green xx

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  16. Josie Kemp

    Dear Ned,
    I don’t know you or your parents. I am a friend of Dan Ely’s through his mum Carolyn. I have just read your story and it moved me to write to you and let you know what an amazing, strong and determined human being you are. Continue to gain strength, continue to heal…and please stay with us. This world needs people like you. To Mum and Dad…….you have to know you will get through this. I send healing thoughts to Ned and my love to you both. Josie x

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  17. Trev Mehtar & Claire B

    Completely adore your darling Ned. Am thinking of you all and sending you continued strength and love.

    Claire, Trev & baby Agatha x

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  18. Natalie Holmes

    Thank you for your blog which I found on Little Hearts Matter. Ned is a truly inspirational little boy and I wanted to know that I am sending lots of love and prayers to help him find the strength to get through thisxx

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  19. simon

    Wow…
    What extraordinary emotions to be put through – your thoughtfulness and willingness both to face up to the worst possible news and to share those thoughts with us is really humbling Andy.
    I have to say your timing was a little off this morning – reading that as my commuter train arrived at Paddington this morning got me some funny looks as I was transfixed and watery-eyed by your post rather than rushing off the train as usual.
    You now have a strange power over probably hundreds of people, living their lives in a semi-trance as they await your next message – like a general and his troops, just waiting to know how and where to focus our energy next. So the focus now is on raised blood pressure and fighting the infection – you know that you now have your followers sending all their positive thoughts directed at those two things!
    By the way Andy, I see from many of the other comments that we are all hanging on your every word, but I’m sure I speak for us all when I say that you must not feel under any pressure to keep us up to date or to put a positive spin on anything… I know you haven’t done that, so don’t start now – we can cope (just about!).
    Do what you need to do – be where you need to be – your support and love for your family is everything.
    Continuing to think of you all and send all our love and positive energy to Ned!
    Simon, Rachael, Mollie and Jemima xxx

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  20. Julie and Steve

    Delighted to hear that Ned is continuing to fight and that his blood pressure is improving. We are in awe of you all for the amazing way you are dealing with everything that is thrown at you. Thank you so much for keeping us updated Andy and for the honest and open way in which you relate what is happening.
    Love as always
    x

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  21. Emma Urquhart

    What an incredible little boy he his. Keep on fighting, one step at a time, and kick this infection.
    Clare and Andy you’re both amazing, remember you are in all our thoughts and prayers. Everyone is behind you sending as much love and positive thought as we possibly can.
    All our love
    Emma, James, Izzy and Millie xxxx

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  22. Lorraine Henry

    Reading this was both desperately heartbreaking and immensely inspiring. Such amazing love and devotion up against the despair and anxiety this infection has caused. Stay strong all of you, there’s a wealth of love and support everyday outside those hospital walls for you. xxx

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  23. Kerry

    Thank you so much for the update Andy. My last thought before sleep and my first thought on waking was with Ned, like so many other people whose lives have been touched by your amazing little boy. You are all constantly in my thoughts and prayers and how you and Clare have shown such strength is an inspiration to all.
    Come on little one…. you can fight this xx

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  24. Natalie Baird-Clarke

    Well done Ned – you are doing brilliantly! We are sending over as much love and positivity as we can muster and you have been in our thoughts and prayers constantly.

    Natalie & Isabella xxx

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  25. Jools

    Come on Ned! We’re all rooting for you and upholding you and your Mum & Dad in our thoughts and hearts every minute of every day, Jools xx

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  26. Fran and Malc

    Thank you Andy. We know how hard it must be for you to write the blog, but we all appreciate it so much.
    Ned you are an amazing little star, get rid of the nasty infection and keep getting better every hour.
    We are sending all our love, hope and prayers to you all.
    Fran and Malc xxxx

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  27. Akan Huseyin

    Well done to nurses, doctors, and especially the family around this young boy. I say it again a young boy has very powerful Angelic, pure, power and it is of no doubt to me that as well as the amazing physical support he is getting, His soul is getting spiritual and divine support from the prayers of those close and afar to him who love him or who love humanity.

    It is those prayers that will continue to help him pray….

    Prayers are with you also Andy and your wife you have both shown amazing responsibility and commitment to your situation. I am proud and happy to know you mate.

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  28. Manny

    Absolutely touched by learning about young Ned. There is a Godly strength inherited in him from you both. May your strength carry you all through the testing time ahead.

    Prayers, strength, faith and friendship.

    From Manny and family
    [Rochester, Kent]

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  29. Sarah

    Thinking of you all non stop and praying for the little superstar Ned. Keep strong. All our love A, S, G and I xxx

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  30. James & Marie

    We continue to be with you every minute of every day. Love and strength to you, Clare, your wonderful in-laws and of course Arthur and Alice. Ned, the lion’s share of love and strength is of course reserved for you, and I am pleased to report that there is a never-ending supply coming your way.

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  31. Clare Doody

    So relieved to hear there is hope. Ditto your friend Simon’s comments regarding keeping us updated – I know you’ve said it is cathartic however I can understand why, after recent events you haven’t had the ability to write. You and Clare are so incredibly brave, it is every parents worst nightmare to be in the position you have been in but I believe it is your love and devotion that has given him the ability to fight so hard. He is clearly an amazing little boy who is not willing to give up. Praying for you every day. Lots of love to you all, The Doodys xxxx

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  32. Liza

    I am so sorry you are all having to go through this and that Ned is having to fight this virus when he is already battling so much. Having such a loving family by his side will make this bearable for him and hopefully give him the strength he needs to keep on fighting. I have no doubt that you did the most selfless thing letting him know your love for him and pride in him is unconditional. He clearly has an indomitable spirit. I hope that one day soon he gets to enjoy the carefree childhood he deserves with his wonderful family.

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  33. Cheryl Douthat

    I know there is a long road ahead but this little fellow has what it takes! So relieved to read your beautiful update this morning, Andy. Please wrap your arms around Clare, John, and Jennifer for me and know we are sending our love and strength to each of you. Cheryl

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  34. Vanessa Hill

    Andy, thoughts are with you and your family at this time, keep fighting little one, the world is out there waiting for you to enjoy it!

    Much love from across the miles,
    Ness

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  35. Sally Otter

    It was both heart-breaking and wonderful to read your update this morning. I reiterate what one of your friends said in an earlier post – that Ned’s situation is the last thing we think of before we go to sleep and the first thing we think about in the morning, so it was amazing to read your update today. I simply cannot imagine how exhausted the whole family must be. How wonderful though to have Jen and John by your sides during this time.
    Huge love to Ned – we have immense admiration for his strength of spirit. And to you and Clare too – it must help Ned so much to have such courageous parents on his side.
    Thinking of you and sending positive thoughts.
    Sally, Jon, Olive and Bert xxxxx

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  36. Louise, Colin, Toby and Benjamin

    We have been thinking of you all and it is so good to read of Neds positive progress overnight. Love and prayers from us all xxxx

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  37. Norma

    Edward’s an amazing child; with bucket loads of determination thank goodness. !!! Well done Edward ; hang on in there ” you clever little sausage.”
    Oh Clare, Andy; what amazing parents you are; the selfless and most painful decision , for the sake of your child; to let him know that if he can’t cope with the struggle, that it’s not his fault, and that you understand. As you know I’m “an old nurse” and that conversation and giving permission to your loved one, horrendous as it is , I believe is the most kind and selfless love you can show ; should unfortunatly “things” get to that point . You are wonderful courageous parents; and I hope and pray you are not in that situation again ! As you say he was not about to take any notice of that .Thank God !!! Hang on little trooper; with love and a constant supply of positive vibes to you all !!!! xxxxxxx

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  38. Kim Royle

    Thank you for the update Andy- thinking of you all constantly and in particular little brave Ned. I have been following Fiona’s posts on facebook and this blog. I now realise how people must have felt reading Kerry’s blog- a little helpless and with enormous sympathy and just huge admiration for not only Ned but also you and Clare. All mine and Andy’s thoughts, prayers and wishes are with you all.

    Lots of Love
    Kim and Andy xxx

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  39. Kira

    Thank you for the update. I’ve been holding my breath for a post like this. I don’t think you are biased at all – he is amazing, as are you all… No doubt the unwavering love and support network you provide helps him fight on. Lots of love. XXX

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  40. Cally, Stu and Jude

    We were so so pleased to see a post from you today, thank you so much for taking the time to update us all and such heart warming news to hear that Ned is improving little by little. I have nothing but admiration for you all. I was shocked to read that Ned has been awake, like others, I just assumed he was still unconscious through all this. He is such an amazing boy. What an inspiration to us all. We will continue to pray and send all our positive energy to Ned. Hugs and love to you all x x x x

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  41. Donna Jones

    Dear Clare and Andy,

    I am sat here in tears, after reading your blog, which was posted by a friend on Facebook.

    I wish I had words of comfort, something insightful to say that would give you comfort and strength but you already are a wonderfully strong couple and family.

    I have lost 2 boys to HLHS. Charlie spent 142 days earth bound before he grew his wings and Kian lost his fight in utero.

    Having never met you all, believe me Ned will be in my prayers and he has fought so hard for so long, I pray he doesn’t give up yet.

    Lots of Love
    Donna

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  42. Sue

    Having read your recent message, I felt that I must reply.
    9 years ago we were in a very similar situation as you find yourselves in now.
    Our son, Harry aged 12, has HLHS.
    In August 2004 he had his Fontan at Guys.
    10 days post op he contracted a Staphylococcus infection in his chest cavity and was critically ill. We prepared ourselves to loose him.
    Children are truly amazing and they really do push the boundaries of medicine.
    Never give up hope. Harry is living life to the full and proof that they are fantastic children.

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  43. Pippa Shay

    My admiration for all of you is over-flowing. For Ned for keeping on fighting against all the odds and for you and Clare for letting him know that it was ok not to fight anymore if he couldn’t, no matter how desperately you wanted him to. And that he had not ever let you down. What an incredible gift to have given him. Pure, unselfish love when every part of your beings wants him to fight.

    Last thing before bed, first thing on waking and throughout the day we check for news, like most people. The first words out of our mouths are “Any news on Ned?”. We are always so grateful when you’ve had time to update us but everyone understands that, if you can’t, the worry for us of not knowing what’s happening is nothing compared to what you’re all going through. We can wait.

    I think there can be no doubt that Ned has touched thousands of lives (how many four year olds can say that?) and the honesty with which you share what you and Clare are going through is truly humbling.

    Thank God for you and Clare being the most amazing parents and John and Jenny supporting you. Thank God for the doctors and nurses who won’t give up either. Thinking of Alice and Arthur too and whatever they’re going through, bless them.
    Thank God for Ned, keeping on fighting because it’s what he wants to do. I will keep on holding him in my heart every moment and praying for him to feel all the love and healing pouring his way. And to you and Clare, you are both amazing.
    Come on Ned xxx

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  44. Adam and Laura

    Ned, Andy, Clare, your strength and love is amazing. You are in our thoughts constantly and we send all our love.

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  45. Polly Byrne

    Darling Clurr and Andy, I find it hard to write publicly here, but do want you to know how deeply you are in our thoughts and prayers, and how much the whole Byrne family is rooting for you and beautiful Edward. Like everyone here, we are constantly thinking of Edward, and checking the blog for updates. I was absolutely horrified to return from a weekend away “incommunicado” to read of Ned’s terrifying struggle on Sunday night. Strangely at around that time, having been in touch with Clare, I was hanging Ned’s name on a “Wishing Tree” in a beautiful shaded park. You are absolutely in our hearts. I truly believe that Edward will pull through this, and that you will enjoy happy, fun times as a family together again. You both have my absolute admiration. You are so strong and so brave, and John and Jenny and all your family are such a wonderful support. This amazing strength and love is powering Ned along, together with his own indomitable, marvellous little spirit. Thank you for sharing all of this with us so bravely and honestly. Dearest Wheatleys and Austins, we are with you all so deeply in spirit and send you all our love and strength. Polly, Jaapy, Ella, Meggie and Tom xxxxxxx

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  46. Pettifers

    Dear Andy – as one of the ‘semi-trancers’, I was so glad to read this latest update. You clearly had the worst night imaginable, yet the strength and indomitable spirit of each and every one of you simply shines through in your post. Your unconditional love and strength to cope with the nightmare you are having to live through leaves the rest of us astounded and humbled, and I just don’t have the words to describe your amazing and fantastic Edward.
    Take good care of yourselves, Edward needs you both to be fit and well to give him the strength he needs to fight this awful infection, and please let your wonderful son know that we’re all rooting for him.
    Lots of love & hugs, Sandra & Alex xox

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  47. Melissa Pittock

    Keep it up Ned….. You are amazing! You are constantly in our thoughts. What a truly wonderful family you have surrounding you with so much love. Xxxx

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  48. Ian and Jen Ponton

    So glad Ned is improving. It seems so much better news but we are so sad that he is having to go through such a dreadful time. Thank goodness he has such a wonderful Mum& Dad not to mention our dear friends Jen & John as grandparents.
    We look forward to more good news tomorrow.

    Lots of love Ian & Jen

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  49. Hugh & Hanneke

    You bring us very close to your situation and feelings and emotions. Your courage and endurance amaze us! But we especially of course are in awe of Ned’s determination and bravery which is of an amazing order altogether ! On monday we prayed with our grand kids (11 & 7 yrs) they keep aking after Ned. God Bless you all.

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  50. Sally Spring

    Ned

    Just come back from Giffords Circus tonight…keep fighting little chap because
    you have got to go and see those acrobats and Tweedy the clown next year …

    You are all constantly in my thoughts and prayers ….hang in there

    Much love
    Sally, Dave, Ben and Sam Spring

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  51. Geraldine Craig

    Dear Ned, Clare and Andy

    You are constantly in my thoughts and we are all praying for you. I’ve only known Clare a short while, but knew she was special – I now know what a truly special family you all are with your selfless love and strength. God Bless Little Ned. God Bless you all. Geraldine, Dave and Hedley xxx

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  52. Pip Fox

    Very grateful to have found your blog as i’ve been thinking of you all a lot, you have the entire town of Cirencester behind you Ned, that’s for sure! Keep it up little man, am in awe of you and you Clare, Andy and your family, with love from Pip, Rob, Bessie and EdithX

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  53. Lizzie

    Dearest Clare and Andy we are continually praying and will be all night again. … having a new baby who doesn’t sleep much allows great prayer opportunity! Last night we prayed for blood pressure and will continue to pray for a fight against the infection tonight. Praying also for Ned to feel peaceful and to have beautiful dreams while he rests and recovers. Loads of love to you all xxxxx

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  54. Claire

    I wish I could gather a world full of health ,and place it in your hands for your son. As it is, I can only praise your courage but understand how deep a depth that comes from,as a mother of 3 myself. I send to you from Spain all the courage and love I can muster and hope that it fills a little piece of your soul. For your beautiful Ned, Bucketloads of love and strength he needs to continue his fight.

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  55. Helen Booth

    Hi Andy and family,

    Andy, I think it is fair to say that you are not bias, Ned is clearly a very, very special little boy. The strength and determination of Ned and the honesty and courage of you and your family Andy is truly humbling and inspirational. I have never prayed so hard than I have for Ned. WHAT a trooper! I think it is safe to say he puts a lot of us to shame. You can do it Ned!!
    Since my Mum (my mum is Chris from FUFS, who is also praying for you all and reads your blog with anticipation, she just can’t quite work out how to leave a comment yet! Slightly technically dyslexic shall we say :-)) told me about Ned’s operation and your blog and like so many it seems, I have been reading with baited breath and tears running down my face. Ned and his story has deeply touched so many of us, he has your unwavering and astounding love and support and clearly the thoughts, love and prayers of your family and all the rest of us. My Mum has often spoken of Ned to me and how special he is and what a wonderful family you are. I will continue to be thinking and praying and wishing the very best for all of you, particularly your little trooper. Love and blessings, Helen (i met you , Andy and Ned and Arthur and Alice in the park a few months ago with my little cousin and mum and we all played on the swing). xxx

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  56. Helen Booth

    Hi Andy and family,

    Andy, I think it is fair to say that you are not bias, Ned is clearly a very, very special little boy. The strength and determination of Ned and the honesty and courage of you and your family Andy is truly humbling and inspirational. I have never prayed so hard than I have for Ned. WHAT a trooper! I think it is safe to say he puts a lot of us to shame. You can do it Ned!!
    Since my Mum (my mum is Chris from FUFS, who is also praying for you all and reads your blog with anticipation, she just can’t quite work out how to leave a comment! Slightly technically dyslexic shall we say :-)) told me about Ned’s operation and your blog and like so many it seems, I have been reading with baited breath and tears running down my face. Ned and his story has deeply touched so many of us, he has your unwavering and astounding love and support and clearly the thoughts, love and prayers of your family and all the rest of us. My Mum has often spoken of Ned to me and how special he is and what a wonderful family you are. I will continue to be thinking and praying and wishing the very best for all of you, particularly your little trooper. Love and blessings, Helen (i met you , Andy and Ned and Arthur and Alice in the park a few months ago with my little cousin and mum and we all played on the swing). xxx

    Reply
  57. Emma Pete and Rosie

    Sending you love and strength Ned, keep fighting, your spirit gets stronger every moment. To Andy and Clare, Jenny and John thinking of you constantly. xxxx

    Reply
  58. Julian

    Hi Andy and Clare – we are thinking of you and Ned throughout each day. Andy, I really don’t know how you are managing to share such a truly exceptional and emotional experience as you strive to keep your amazing Ned on the road to recovery. You, Clare, Jenny, John and the medicial team are doing everything that you possibly can to give Ned the best chance. Keep positive and keep going Ned !
    With Love from Julian, Nicky, Hannah and Christopher X X X X

    Reply
  59. Denise Grayson

    I do not know Ned personally, however, Faith Berry has informed her friends here in San Francisco California and we are praying for Ned and for your family. Continuing to pray as you update us in the U.S.,

    Denise

    Reply
  60. Rob Walpole

    Andy, Clare – I can only add the Walpole’s piece to the heartfelt support that you get from friends all over the world. All I can hope is that our prayers and wishes help one small iota to Ned’s recovery. As I saw from one of your friend’s posts a couple of days ago – from the bottom, every small step is one towards recovery. I pray that these few steps you talk about in the blog are on that path to recovery

    Your courage and strength (yes, Clare, that means you too….) are inspirational.

    Reply
  61. Mike

    Ned – I do not know who you are – I read you’re parent’s blog after seeing an internet post. You by all accounts are a very strong young man and I can see from some of the scrapes that you have been in a very determined fighter. Keep up the fight young man it will always be worth it.

    To mum and dad – words do not come easily; you find yourself in a position which is the most horrendous of all dreams come true however you both display the strength of titan and the undoubted characteristic of love that only parents can show. Your posts are an inspiration and an insight. I do wish I could help you however all I can give is my most strongest best wishes ; you have the people around you that you need and they too seem as determined as you are .

    I wish you the very very best of luck It is all to fight for – I will watch and send best wishes from afar.
    Good luck and god bless.

    Reply
    1. garry stoner

      each morning, first thing we check out your update Andy and each morning as we open your blog we pray for good news – what a few days you guys have been through – we are right with you, amazing how you are keeping it together Andy and Clare to actually write these blogs! you all deserve this to have the right outcome. Garry & Julie Stoner

      Reply

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