About Campbell

Campbell Burns

Campbell Robert John Burns was born on 24th January 2012. He is absolutely gorgeous and loved so much by his Mum, Dad, big brother Daniel and big sister Holly.

When Campbell was nine weeks, he was diagnosed with Leigh’s Disease. The diagnosis came out of the blue – although little, he’d been putting weight on steadily and seemed fairly well up to that point.

The diagnosis was devastating. Leigh’s Disease is a rare metabolic disorder which affects the mitochondria in every cell in his body. It means Campbell cannot produce energy properly.

Ultimately, Leigh’s is untreatable and terminal. It means that Campbell’s life expectancy is extremely short. We don’t know how long he’ll be with us, but most children with Leigh’s do not live more than a couple of years.

Campbell is a treasured little boy and we are so grateful to have him in our lives, regardless of how brief a time that will be. We will pour a lifetime’s worth of love into the time we have him and, when he isn’t here, we’ll love him some more.

This blog is a record of Campbell’s experience and the experience of our family. I will update it when I can – it might not be every day as this is a bumpy journey that we are on. But, if you follow the blog, please don’t keep it to yourself. Get in touch, pass the blog address on – Leigh’s is so rare that any shared information might help other families (and us) cope.

Love Bekki and Mark xx

****UPDATE, October 2012. Campbell tragically lost his battle against Leigh’s Disease on 28th September 2012. He was brave right to the end, and passed away very peacefully, cuddled and held by his Mummy and Daddy. We were privileged to be his parents.****

58 thoughts on “About Campbell

  1. I went to school with Mark , i just want to you to know that the thoughts of myself and my own family are with you all.

  2. He’s gorgeous and will be the most loved little boy ever. I’ll be following the blog but in the meantime, see you both on Wednesday. Much love Janet xx

  3. Our beautiful nephew. You are so loved, and we can’t wait to give you some more kisses and hugs. We are with you every step of the way. Xxxx

  4. You don’t me but I’m a friend of Tracy’s…..all I can say is absolutely heartbreaking and hope and pray of a miracle for you…..you are all very brave and can honestly say I don’t know how I would cope. Thoughts with you. xxx

  5. Becky and Mark, I’m so sorry to hear about Campbell’s illness and cannot imagine how difficult things must be for you both. I know you both have a great relationship and sounds like a wonderful family unit, and know you will all be a huge strength for each other when you need it. Enjoy the precious time you have with your beautiful boy Campbell and know that you are very much in my thoughts, sending you much love, Eilidh x

  6. Oh Bekki, I’m fighting back the tears as I write this. I can only imagine the sadness and heartache you must feel every minute of every day and I will be giving my little boy an extra big cuddle tonight. Life is so incredibly precious and taken for granted. Be brave and stay strong. Sending you and your family lots of love xx

  7. What a beautiful boy… let the love and strength of family, friends and strangers support Campbell and his family. Bless every moment together xxx

  8. Youre all in our thoughts and prayers,right now, Beckii and family, so sad to read about campbells illness, will put his name on our prayer focus at church, praying for a miracle for you and your family, god bless xxxxx

  9. What a beautiful little boy! My heart goes out to you and your family and most of all little Campbell! Being a mum myself I can only imagine what it must be like! Much love xx

  10. Just had email (via Bulwell URC) so sad to hear this. Will pray for your family. Enjoy this time with your treasured boy!

  11. I saw this page through my cousins facebook. I am a paediatric nurse and have nursed a child with Leighs disease for many years now. He has turned 16 recently. Hope fully you will enjoy and cherish Campbell for many years. You are in my thoughts and prayers as you embark on this family journey. Pam x

  12. Hi mark and bekki, we met you at Erols birthday, and can’t believe what is happening to such a lovely family, all I can say is that our hearts go out to you and Tracy is keeping us updated and we send our love to you all x

  13. Heart Broken all members of the family, I can’t be away from my Son for more than a couple of hours… I’ll share this, I didn’t even know about the disease.. I have no more words…

  14. I am a friend of tracys. You have such a gorgeous little boy. It is so heartbreaking and our thoughts are with you all. Xx

  15. Hi there.

    I used to look after Gracie and Charlie at nursery and I looked after Holly and Daniel one time whilst Charlie was poorly. They are gorgeous little children and Campbell looks adorable. I’m so so sorry to hear your news.
    I can only try to imagine the pain you must be feeling and my thoughts are with every single one of you.
    I’m not sure what else to say but you’re all in people’s thoughts and we can only hope for a miracle and that you have the most time with your little man!!
    Lots of love Cheryle xxx

  16. Hi
    I go to Bulwell URC and have just been sent a prayer request. Just wanted to let you know that I will be keeping you all in my prayers. Secondly and most importantly Campbell looks gorgeous!

  17. Mark, Don’t know if you remember me in resource management in Hinckley but it doesn’t matter. Tanya Upton told me today about your beautiful baby boy. Moved by what she told me is an understatement. I have no comprehension of what you & your family are going through but would like to as a mum & nanna, express my heart thoughts to you all. I will be following your blog. xx

  18. Hi Mark and Bekki
    There haven’t been many times in my life when I’ve wished for a Magic Wand, but this is one of them. Keep strong. Best. Tony

  19. Hi Bekki and Mark
    We are so sorry to hear this sad news and hope that you cherish everyday togeher as a family, love and best wishes Emma and family x x(fern & paul Lilley’s daughter).

  20. you guys are amazing, my heart broke for your family when Chris told me. You are all in my thoughts. I have had some hard but amazing conversations with Grace who frequently tells me how much she loves Campbell and her aunty Bekki and Uncle Mark,( “Dan and Holly are funny”!!) sending huge hugs and love to you all xxxxx

  21. I’ve just read about Campbell and wanted to get in touch and tell you how beautiful he is. Our baby girl Tilly was diagnosed with Turner’s syndrome and was stillborn at the end of February. You’ve been given a precious gift and no matter how long or short a time he’s with you he’s part of you both and that’s a gift to be cherished forever. Sending you our love xxx

  22. Dear Bekki and Mark, I guess you might remember me from Dundee Uni. It’s been a long time. So sorry to hear your sad news about Campbell. Wishing you many precious moments with your family. Best Wishes and Love x x

  23. To all the ‘cardwell – burns’ family our thoughts are with you at such a difficult time, from the bottom of my heart i hope you have as much time together as possible and wish you many happy memories that will last you a lifetime xx

  24. My love and thoughts are with you all, I am a friend of Tracys and I cannot comprehend what you must be going through. Little Campbell has touched all our lives and your strength is an inspiration to us all.

  25. Mark – he is gorgeous and a real blessing. Your love for each other is so clear and will hold you all together forever. Kathryn

  26. Hi, I found your page after one of my friends shared it on Facebook. Campbell is a wee cutie I’ve read all the posts and i’m really sorry and my thoughts are with you. My daughter is a month older than Campbell, she was born christmas eve. I’ve been reading your blog while I’m away at work, I work offshore in the oil industry and reading it makes me want home even more to cuddle our little one up. I wish you all the best for the future x

  27. Love and prayers for all of you, now and in the months and years to come. Treasure all you have now. I am a friend of Jude Stimpson and found your story through her facebook link. Words are useless and will sound hollow and pathetic but you are a very special family with a beautiful boy. Kathryn

  28. What an adorable little boy. I’m so sorry to hear that Campbell is poorly – I really can’t imagine – I’m lost for words. Enjoy every precious moment – my thoughts are with you. x

  29. We heard your news via the NG crowd on Facebook. It’s taken me a while to post anything – just didn’t have the words. I moan aboout the behaviour and attitude of our 11 year olds…then I read your blog and it puts my life into perspective. I’m so impressed with your postiive attitude and how you are channelling your energies, I’m not sure I could keep things together like you are. Three gorgeous kids…long may it continue. Lots of love from Montreal xxx

  30. Absolutely wonderful family!i look after holly at nursery they have always got a smile on their face even with the pain they are going through!so sad to hear the news about Campbell you will all be in our hearts and thoughts!x x

  31. I’m an old colleague of Mark’s from the audit team. So sorry to hear about the illness of your little darling son, Campbell. My thoughts are with you all.

  32. Hi It’s Mrs. C here dont have much time when I see you in school Dan let’s me know how Campbell is but I just want to let you know that you are such a lovely and amazing family and my thoughts are with you daily God Bless! xx

  33. Hi it’s Ray and Vinny’s mummy. Thinking of you all, only the strongest parents get the most special babies. I really recommend The Laura Centre they are fantastic. They are councilors for children and parents who are dealing with life limiting illnesses and bereavement. I use them and they really are amazing plus they are a charity. I really wish you all the best xx

  34. John told me all about Campbell today. He’s adorable in the pictures. So sorry to hear about Campbell’s illness.

  35. Hi Bekki, it’s Maggie Butler from EDI. I’ve just read about Campbell, and wanted to say what a gorgeous little boy he is. I’m so sorry for his illness, and you will all be in my prayers. You sound like a fantastic mummy!!

  36. hi mark and bekki. i just wanted to let you know how wonderfull you all are. you dont no me but i was on the sponsered walk today with my daughter samantha from whitwick nursery. i felt very honoured to meet campbell he is a beautifull little baby. i wish you all the very best for the future you have a wonderfull family. take care xxxx

  37. Hi Bekki and Mark, I looked after Daniel and Holly at Paper Moon. Thinking of you all and was so sorry to hear about Campbell’s illness today. You have each other, such a lovely and strong family, to help you through this! xxxxxxxx

  38. Im so sorry to hear your sad news i was up for hours last night reading your blog you are all being so strong and you must be extremely proud of the way Daniel and Holly are handling the news. I used to look after Daniel when they came to Papermoon and Holly used to play with my son Alfie. sending all the love and hope i can x

  39. old friend of Tracys here, was just reading this blog and find it extremely sad, My heart goes out to the family close and extended, must be the worst thing on earth and I cant even begin to think how you feel, Campbell is very honoured to have such a nice family around about him all the time although his life may be short, keep strong little boy xxx

  40. Hi guys- Im a pal of Tracys from way back- Campbell is truly blessed to have such a loving family around him, as you are too, to have him. I have been following the blog from only recently, but have set it on my FB page to spread the word. Thinking of you all, Kirsty.

  41. I am so sorry to hear about Campbells illness. When my Mum told me about Campbell I started crying! I am even sorrier to hear he pasted away. I am sure he had a wonderful life and couldn’t have asked for better parents! Much love

    Mahala Pettit xxxxx

  42. Hi again,

    In Science we are doing diseases and virus’. We have to do a leaflet on one disease or virus and I have chosen to do leigh’s syndrome. I hope though that I can help spread the word of this disease. All my love

    Mahala x

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