A Mountain to Climb

I thought it would be good to give you all an overview of where we are right now.

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A morning chat with mum. Ned can hear us and we talk to him as often as we can

Ned is still critically ill and on a ventilator. It is a reflection of just how sick he was on Sunday that we now see this as a good place to be. To provide some perspective, the strain and strength of his staphylococcus infection frequently kills perfectly healthy adults. He is 4 years old and has a single ventricle heart. I want to shout from the rooftops of how proud I am that he has managed to fight it off, but I daren’t just in case fate plays another cruel trick. We are taking things one step at a time and looking no further than the day ahead. There is no alternative, because if you look at what he now faces in his climb back to health the scale of it is daunting. Without breaking it down into individual steps it verges on being overwhelming.

Ned is still fighting off the infection. It remains in his body, but is in retreat. It had spread throughout his body into sepsis (or septicaemia), an often fatal full body infection. It was in his blood and all his organs except, miraculously, his heart. We will never know why his heart managed to remain unscathed, but thank heavens it did. However, because it is still hanging around, we cannot take anything for granted. We cannot assume that it will not make a comeback.

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A song or two with Russ

His blood pressure is a constant worry and keeps fluctuating between acceptable and downright dangerous. I am sitting by him now on my night shift and just a few minutes ago it dropped to 55/32. Both his nurses, the night doctor and I watched his monitor with baited breath to see where it would go. It is now 66/37 which is still ridiculously low but we’ve come to accept this as reasonable compared to those dark hours on Sunday evening. We have decided however to give him a blood transfusion, just to be safe, as his haemoglobin levels are a bit on the low side. The blood is currently on its way via courier right now and will probably arrive at around 3am.

His kidneys are also a major concern. They have pretty much shut down and he is now on permanent dialysis. We simply do not know what condition they are in and have been told that there is no guarantee that they will work again. Bearing in mind what he’s already been through, kidney failure would be a real kick in the face but we are hopeful that, given time, they will slowly kick into gear.

We also don’t know if the fontan operation, the main reason why we came here in the first place, has worked. Before the infection took hold, his overactive drains and chyle in his fluids suggested that his body had not yet accepted his new circulation, but we had to put all of that on hold just to keep him alive. Even now, we still haven’t returned to looking at it and it is a great source of anxiety. Everything will be done to encourage his body to accept the fontan and he will be given as much time as possible to adapt, but if it doesn’t work he will have to face the awful prospect of being opened up again to undo it.

Time is now key to Ned’s recovery and we’ve been told that we need to be prepared for a very long haul. Ned’s journey from near death has surprised us all – several doctors have told us that they did not expect him to still be here – and it is going to be a painfully slow process from here on in. We have been told to expect many setbacks and not to get ahead of ourselves. Ironically, today is the day I originally predicted that he would be fully recovered from the fontan and back home. Please call me if you want any other predictions for major sporting events.

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Every morning, the doctors, surgeons and consultants meet by Ned’s bed to discuss his options

From a very personal perspective, I would be lying if I said that I am taking this in my stride. Every morning we get a briefing from his doctors that often leaves me quite down. It is quite right that they urge caution but all I want them is to tell me that everything is going to be ok. They can’t do this. He is very, very ill. The list of things currently wrong with him is so long (I haven’t even touched on the myriad of ‘minor’ things – eyes, profusion, swelling, stomach bleeding, mental state) that it can be very dispiriting. That’s why we have to break it down into little achievable steps.

As for Ned himself, what can I say? He has achieved so much. He has stuck two fingers up to every challenge thrown at him. I sometimes wonder if, even in the midst of that awful Sunday evening when it looked like we would lose him, he thought there was much wrong with him, such is his almost nonchalant demeanour. I suspect he thinks the rest of us are fussing over nothing. In the future, it will be very hard to complain about anything without him rolling his eyes at us. He is one tough boy.

Despite these little anxieties and the challenges ahead, we are in general very positive. We have to be. This has been helped tremendously by the amazing messages of support we have had on the blog and Facebook. They are all wonderful, but I wanted to tell you about one in particular that gave me a huge lift. It was at the end of a 72 hour period in which I had only slept for 6 hours and I was feeling very low and emotionally broken. I was looking through the latest tranche of emails and found one from parents whose son has HLHS and had contracted staphylococcus following his fontan in 2004. He had also been at death’s door but is now a thriving 12 year old, and his mum sent us a photo of him playing on the beach just a few days ago. I cannot tell you how much this lifted me and it gives us reason to believe that our own faith in Ned isn’t just self-delusion. There is always, always hope.

63 thoughts on “A Mountain to Climb

  1. James & Marie, Emma & Oliver

    Andy, still so much ahead for you, Clare and Ned, as well as Arthur and Alice who must miss their brother so much. I can’t even begin to imagine what you are living through, as it has been hard enough for us to experience it from afar. We have been with you all the way, and we remain so until you are all back home as a family and and Ned is rolling his eyes at you because you’re moaning about a hang nail or something!

    We were having supper this evening and one of the first things that Emma asked us was “How’s little Ned doing today?” Thank you for continuing to share so openly and honestly. Love from all of us.

    Reply
  2. Rosie M

    Keep climbing that mountain Ned – you have an awesome team of ‘sherpas’ willing to help, incredible ones next to your bedside and many others around the world; all of whom are surrounding you and your family in love and prayers.

    Reply
  3. Shepherds

    We wake up still thinking of you Ned, you are a remarkable little boy. We love you all, and will continue to be with you today in spirit, Jo, Shep, Maisie, Alice, and Cammiexxxxx

    Reply
  4. Shepherds

    We wake up still thinking of you Ned, you are a remarkable little boy. We love you all, and will continue to be with you today in spirit, Jo, Shep, Maisie, Alice, and Cammiexxxxxx

    Reply
  5. john and judy

    update very much appreciated – if we knew how many people were trying to carry just some of the baggage on this climb I believe we would amazed at the numbers and where they all are –
    love from Tavy

    Reply
  6. Clare Doody

    Always thinking positively with you. How wonderful to hear of another child who has been through the same ordeal and is healthy and happy – that will be Ned too. Love to you all xxxx

    Reply
  7. Bridget

    I’m starting to call Ned the ‘miracle how’s, his mum and dad aren’t bad either! He has all the strength and personal fortitude that this mountain takes, and more! Hugs to you all. Bridget xx

    Reply
  8. David and Val

    Thanks very much for this full and clear update. It gives a whole new meaning to the phrase “the daily grind”. What has come over big time over this harrowing period is that most importantly Ned, but very much you Andy, Clare, Jen and John are gutsy fighters and survivors.

    As so many people, my first action on awaking is to check this diary, even before making Val’s cup of tea! We are both willing him to keep taking those small steps.

    Love to you all.

    Reply
  9. Olivia Folkesson

    Ned, you are constantly in our thoughts and thinking of your Mummy, Daddy and family too. Come on little man your amazing, keep fighting and climbing the mountain. Sweet dreams lots of love Olivia, Martin, Emily, Natalie and Jesper xxxx

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  10. Kerry

    Thanks for the update Andy, I really don’t know where you find the strength to keep writing this blog , truly amazing .
    One step at a time and your incredible little boy will climb that mountain ,of that I’m sure. He has a long way to go but he’s heading in the right direction which is good news. He has so much love and support from you,Clare and your family and also from so so many people who like myself, wake every morning wondering how Ned is and willing him to hang in there.
    How the septicaemia didn’t enter his heart is a miracle, maybe it was all the love sent to Ned from around the world that protected it along with the unbelievable strength of Ned himself.
    Positive thoughts and much love still coming your way.
    You’re so right, there is always hope and I truly believe that where there is love anything is possible.
    Keep fighting little one
    Xxx

    Reply
    1. Jane

      “One step at a time, there’s no need to rush,
      It’s like learning to fly or falling in love….

      When you can’t wait any longer
      But there is no end in sight
      It’s the faith that makes you stronger
      The only way to get there is one step at a time”

      Walking with you, in the company of Ned’s Army.
      Love, hugs and the kitchen sink!!
      Jane, Jim, James and Jacob
      xxxx

      Reply
  11. Rachael Tapping

    A big thank you for this update. Like all your friends and family we want to scoop you all up and fly you to the top of that mountain, but time is the healer and we know you can get there. Your positivity spreads across the country Andy, we’re all here rooting for your gorgeous little boy.

    This poem feels fitting for us all to read and remain strong, I hope today brings a small step closer to recovery for Ned. With much love from Rachael, Simon, Mollie and Jemima xxxx

    “Hope” is the thing with feathers
    BY EMILY DICKINSON

    “Hope” is the thing with feathers –
    That perches in the soul –
    And sings the tune without the words –
    And never stops – at all –

    And sweetest – in the Gale – is heard –
    And sore must be the storm –
    That could abash the little Bird
    That kept so many warm –

    I’ve heard it in the chillest land –
    And on the strangest Sea –
    Yet – never – in Extremity,
    It asked a crumb – of me.

    Reply
  12. Julie Shum

    How absolutely amazing is Ned, every morning and all through the day my spirits are lifted as he battles on, … However I do have only big concern and that is that when Ned makes this full recovery, that yourself and Clare have enough money to hire the Wembly Arena that is already on stand by for the reunion of the year xxxxxxx keep fighting Ned prayers and hugs constantly surround you our earthbound Angel xxxxxx
    Ps I don’t omit Arthur and Alice in my prayers love you all xxxxxxxxx and Thank you God xxxxx

    Reply
  13. Val and David

    We also wake up every morning thinking of Ned. So pleased to hear there is some progress and we pray that God will give him the extra strength to climb the mountain back to good health. Thank you Andy for finding the time to write this blog when you must be shattered mentally and physically. Give our love to Clare, Jen and John and the rest of the family. We are with you all the way.

    Val and David

    Reply
  14. Beanie

    I wake up every morning waiting to read your blog Andy. I’m so glad that Ned’s fighting off the infection. He’s been constantly in my prayers. There’s a verse in the Bible about conquering mountains. Matthew 21 v.21-22 and Mark 11 v.22-24. God bless you all. Xxx

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  15. Lisa, James, Olivia and William

    Edward you are truly an inspirational little boy who has shown us all how determined you are to fighting this vile infection. However tiny the steps to recovery are, one step at a time is all you need. Constantly you and your family are in our thoughts, messages and prayers every minute of every hour, both day and night. Andy and Clare you are truly amazing parents. I read your blog with the upmost respect for your clarity and honesty on Edward’s path to recovery. Love is all he needs, and his love for you will carry you through.
    Xxxx

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  16. Rosie and Mark

    Hi Andy,
    We are thinking of Ned all the time, sending positive thoughts with everyone else – Neds army indeed! please send our love to Clare. Xx

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  17. Ian and Jen Ponton

    Thanks for the update – how you do it Andy we don’t know. So good that you received that message about that other lad – we spotted that as a great boost.

    We feel so much for you all & how exhausted you must all be. We continue to think of you & send love & our prayers for Ned & all of you .

    Love Ian & Jen

    Reply
  18. Fran and Malc

    Ned, as everyone else we are thinking about you all our waking hours and sending you all our love, hope and courage.
    Keep fighting and climbing that mountain one step at a time dear little Ned. You are heading in the right direction. Keep going.
    We are with you all the way Andy. We know you must all be absolutely exhausted. You are all doing a wonderful job.
    You are right, there is always hope, and Ned is surrounded by so much love, devotion and hope to help him on his way.
    With our love as always to you all.
    Fran and Malc xxxx

    Reply
  19. Diane Berry

    Dear family Wheatley
    You are first on our mind when we wake (and it was awful not hearing anything yesterday) so glad the infection seems to be in retreat. If its a long haul you are facing please lean on people – we want to help in any way………………..I would like to get away from the builders!!!! Sorry that sounds nonchalant but I bet I sing better than you Andy!!In our thoughts all the time xx
    Lots of love to you all Bob & Diane Berry

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  20. Jools

    Keep on believing, Andy – there is hope, because we human beings are extraordinarily remarkable creatures and Ned seems to be leading the extraordinary charge!
    Sending you and yours love, today and every day,
    Jools xxx

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  21. Katie Tampkins

    Well done Ned, you are doing brilliantly and are inspiring people all over the world.
    We continue to pray for miracles and God’s healing, that Ned’s blood pressure will rise and stabalise, that this infection will be banished from his precious body never to return, that his kidneys will function better than ever and that his body will flourish with it’s new circulation. We pray for health, strength and peace for all your family.
    Masses of love, Katie (from FUFs) xxx

    Reply
  22. mrs smith

    I have been reading your blog your son is such a brave hero, my son has hlhs too and will face his fontan in three years at the evelina.I truly pray your son makes a full recovery , stay strong together xx

    Reply
  23. Trev Mehtar & Claire B

    Hope you had a comfortable night Ned. You are an inspiration. Andy, Claire – just keep doing what you are doing, your love and strength is priceless.

    All our love
    Claire, Trev & baby Agatha

    Reply
  24. James Whistler

    It was amazing to read the entry about the other chap who’d been through such a similar set of circumstances; inspiring stuff. There may indeed be a mountain to climb, but to know others have made it to the top is wonderful.

    Everything remains firmly crossed here. Hang in there and take care of each other.

    Reply
  25. Ruth & Roger

    How good to read this news this morning. We are amazed and uplifted by the way that both you and Clare and all the family are coping, so thank you Andy for your strength to write these updates. You are in our thoughts so much as we continue to pray for Edward’s wonderful fighting spirit and for more small daily miracles to take him step by step up this mountain to full recovery. Xx

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  26. Martin & Vanessa Streets

    It has become the routine now to look for the updates from you first thing in the morning. I can only say that our admiration for you and Clare is total and without bounds, whilst the love and hope that we send Ned every morning and night will be endless. Your medical team are the most incredible bunch of people, but as clever as they are – Ned has a lot to teach them about the power of limitless love. Have a good day today and an even better one tomorrow xx

    Reply
  27. Melissa Pittock

    So wonderfully good to hear that things have stabilised a little. We are thinking of Ned and you all so much. Thank you for your incredible updates. Keep it up Ned- you are AMAZING! Big, big hugs. Melissa, Ian, Harry and Charlie xxx

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  28. Justin & Lucy

    What an amazing little boy Ned is, if anybody can make it he can. I’m sure so much of his strength must come from his wonderful parents and family – keep it going, you are doing such a brilliant job for him, our love and thoughts are with you , Justin & Lucy

    Reply
  29. David

    I’m another “Heart Dad” recently released from Evelina. Alasdair who’s 12 was in for a catheter procedure and supposed to go home next day. Instead we were 2 weeks in Evelina and another 2 weeks in local hospitals but Alasdair is well again and managed the last 2 weeks of school full time.
    There are some pics on the little hearts web site. Your emotional roller coaster seems scarier than ours but the quality of your writing means I feel I’m in PICU all over again. Wish I could make you a coffee or give you half an hour off so you could talk to Neds mum in a different atmosphere. Hope there are people around who can do that for you. Be gentle with yourself. Hoping for the best, David. P.S.

    Reply
  30. A friend of a friend

    Someone above mentioned Ned’s army – what a great way to put it. We’re all really proud to be in Ned’s army!

    Come on Ned, you’re doing really well. You too dad, keep it going…

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  31. kate

    We have been talking about Ned everyday, praying and wishing with huge hope in our hearts, He is amazing as are you both, He is wonderfully loved.
    Sending you all our strength and love xxx

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  32. Natalie Baird-Clarke

    Wow – these updates are spellbinding, thank you Andy. And it is wonderful to see how many people are responding with such an enormous amount of love.
    Ned – you are doing such a fantastic job, you are like a little super hero! We are so proud to be part of Ned’s army.
    Sending you and your amazing mummy & daddy and the rest of your family all our love – you are all in our thoughts and prayers.

    Natalie & Isabella xxx

    Reply
  33. Tracie Percival

    Hi Andy, I’ve only been following Ned’s journey for a few days, I wanted to tell you we’ve been there too. My daughter had the Fontan when she was seven….she too had major complications and we were in hospital for six weeks. Bianca is 17 (18 in September) I’ve just been reading your latest update to her. We wanted to send you a photo of her now to give you hope….our Fontan kids are incredibly strong, amazing and special……We send you love strength and positive vibes to you and your family….especially Ned. xxhttps://fbcdn-sphotos-h-a.akamaihd.net/hphotos-ak-prn2/165808_10151069389598966_446780982_n.jpg

    (By the way….the photo is of Bianca, my self and my son….we were at a Blur gig which explains the sweaty faces!)

    Reply
  34. Valerie Lang

    Andy and Clare. You are amazing in your stamina and constant care of little Ned. He is a true fighter and an inspiration to us all. We thank Clare’s parents and family for looking after all of you. They must be a huge help and support. Keep strong and keep talking to him……he can hear you. We are still praying and thinking of you always. Little steps forward……xxVal, Darrell, Evan and Simon.

    Reply
  35. Anita

    Well done brave little Ned, i am so glad you have found the fighting spirit to overcome this infection. You are one remarkable little boy. Thinking of you always, Anita x

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  36. Sally Spring

    So wonderful to hear Ned is fighting off the infection. One step at a time is all
    you really need to climb a mountain and it is very clear Ned has his boots on and
    is marching on ahead ! Do take care of yourselves though, as much as you are able,
    if this is going to be a long haul then Ned needs his sherpas to be as good as they can be..
    Thinking of you all and also Arthur and Alice who must be finding it hard too……
    Sleep well Ned and keep climbing darling
    Much love
    Sally, Dave, Ben and Sam Spring

    Reply
  37. Catherine

    Thinking about you all. Cannot imagine the strength that is required from you both and especially from Ned. What a fighter your little man is. We all send lots and lots of love to you all. From Catherine (formerly wormald) and the Gaonac’h clan
    xxx

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  38. Lizzie

    Met with some friends and prayed for you today. People also meeting at church again tonight. We think you guys are awesome especially you Ned. We are all rooting for you. Praying for God to help you all and give you peace. Lots of love xxx

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  39. Alison Bloxham

    Andy and Clare,
    I’m overwhelmed at reading your profoundly moving blogs about your brave little boy’s traumatic and turbulent post op progress. You are amazing, strong and wonderful parents ….and Ned is clearly a fighter……
    I send you all my best wishes and hope for Ned for the next few difficult days.
    Love to Jenny and John too.
    Will be thinking of you all,
    God bless,
    Love,
    Alison (and John) xx

    Reply
  40. Norma

    Edward , you are ” a super hero”!!! Wonder which one ?!! You are so brave and strong; so keep getting better day by day.
    Clare, Andy ; what an ordeal you have been through!!! …and yes it looks like he has found himself on a particularly steep mountain, but here’s hoping and praying it’s not that high and that there are loads of ledges to rest, regain strength and he will get there.
    Love to you all, hope Alice and Arthur are coping; not forgetting Clare’s Parents and all your extended families who must be going through it too.
    The Medical teams are wonderful aren’t they and your little chap has proven to them you just have to keep trying no matter what. He must be inspirational to them too!!! xxxxxx

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  41. Carl and Gwyneth

    Andy……….. your clarity of mind presenting Ned’s current position to friends is ‘outstanding’ and that phrase does not do it justice. Ned as you have indicated is a warrior within the loving orbit of a special family with world wide friends. The love to each of you from all of us is unconditional.

    Family of Carl and Gwyneth Coates

    Reply
  42. Sally Otter

    Honestly, Ned is a truly remarkable child – it was astonishing this morning to read about what he has fended off in the last 72 hours. Like everyone else, we send all our love and are thinking of you and especially Ned. Thank you for sharing what’s happening. Huge xxxx Sally, Jon, Olive and Bert

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  43. Clair Tucker

    Thinking of you all and always in my thoughts. What amazing parents you both are, you are stronger than you realise. You have a very brave boy there who is giving it his all … Well done Edward, keep it up!!! The whole of Cirencester is rooting for you all and are here to help anytime,
    Much love, god bless
    Clair, Julian, Harry and Emily
    Tucker (Fufs ).

    Reply
  44. Shepherds

    Goodnight Edward, we hold you in our thoughts, and send prayers to you tonight. Rest as much as you can Clare and Andy, and kisses and sweet dreams to Alice and Arthurxxxxx

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  45. Kim Rocknean

    Dear Wheatley Clan

    Would just like to share a personal experience with you….

    3 years ago a very dear friend of mine contracted a very virulent form of meningitis. Within days she was on life support and we were told on one particular Friday night that she would not see Saturday.

    Well I’m happy to say that she did see Saturday and I’m off on holiday with her next month! Doctors and surgeons are fabulous but sometimes they do get it wrong.

    Steve and Fiona know who I am talking about.

    Sending all my love always

    Kim
    Paid up member of Ned’s Army and happy to be a Sherpa whenever I am needed xxxxx

    Reply
  46. Katy Craine

    Dear Ned, Clare, Andy, Alice and Arthur,
    We want you you to know we are with you and sending you all our deepest heartfelt love and strength to help that little mighty one up the mountain he has to climb. You are all being so utterly brave and outstanding. There surely can be no doubt in the power that this is helping Ned keep up his fighting spirit, take care to recharge when you can. We are praying everyday and beaming out our best get-better rays.
    With so much love, Katy, Rob, Kim, Joly and Barnaby xxx

    Reply
  47. Kirsty McGill

    Andy
    We are thinking of you as soon as we wake up to the moment we close our eyes to sleep. How you find the strength to write from the heart at these such challenging times leaves us speechless. I just wanted to send all our love to you, Clare, Jenny and John. Ned is one in a million, such a wonderful, amazing and determined boy!

    We are all living every small step with you and with the strength of your wonderful friends and amazing family Ned will get through this.

    Al our love and big hugs,

    Kirsty, John, Bill and Sandra
    Xxxxxxx

    Reply
  48. tamsin hawkins

    i wake every morning to see what news there is on ned (and even in the night!). so pleased he is climbing that mountain and what fighting spirit he has! i think he gets it from his parents who are doing an amazing job.
    thank you for writing the blog which is honest and helps us understand a little of what of you are going through.it should be read by health professionals too.
    we will keep praying for you all and sending you all lots of love and hugs
    tamsinx

    Reply
  49. Melissa Pittock

    Hello Andy and Clare,
    Been thinking of you so often today and sending positive energy London bound. Was thinking of any way I could help……I am an acupuncturist and thought back to when I was visiting a very poorly Uncle in hospital and gently put pressure on a point called Yintang which is the mid point between the eyebrows…..Applying pressure for about 2 minutes whenever you feel able. This point is extremely calming and could help to soothe Ned…..it had a very visible relief on my Uncle. (Please see the following for exact location: ‘https://www.google.co.uk/search?q=yintang+location&client=safari&hl=en-gb&source=lnms&tbm=isch&sa=X&ei=65TxUb_jNcjAOIn8gdAB&ved=0CAcQ_AUoAA&biw=768&bih=928#biv=i%7C9%3Bd%7CkqOyi2KRTnYNzM%3A’). If there is anything at all we can do please ask. Big hugs, Melissa xxxx

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  50. Emma Pete and Rosie

    Dear sweet Ned. I hope you sleep peacefully tonight and find more strength to climb that mountain. Clare and Andy you are amazing parents, never stop believing and as you say Andy in the darkest moments there is always, always hope. love and prayers to you all

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  51. Helen Simpson

    I read your blog last night for the first time, and of course woke up this morning thinking ‘how is he?’ You are amazing parents and Ned is obviously an amazing boy. Sending love, strength and very best wishes – I’m so glad you’re holding on to hope and think Ned will get much strength from that, Helen (fellow heart parent)

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  52. Kate, Robin, Jasper & Ottilie

    Little Ned will climb this mountain, in his own time, but he will climb it. Your tremendous love and positivity will ensure this. Keep strong, you are all doing so well and are a total inspiration to us all. We are all behind little Ned and are willing him up that mountain. X

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  53. Amanda

    What an amazing little boy. I’m not religious in the slightest, but every bit of me is willing (praying in fact) for Ned to make his way out of this illness. I’m touched beyond words, you are incredibly brave, I’m in tears and reminded to live life to the fullest every day and be thankful.

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  54. Nick Davies

    Hello Andy,

    Thinking of you – as are so many others. The Andy I’ve known for the last 6 years is a true fighting spirit and Ned clearly has it in spades too. Take everything you can from all these messages and stay strong for him…

    Nick

    Reply

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