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Thread: My 2 month old son has a rare liver disease...

  1. #1 Default My 2 month old son has a rare liver disease... 
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    Hi everyone

    Our 2 month old son had an operation 3 weeks ago called the "Kasai procedure" He has a rare liver disease called Biliary Atresia.
    Obviously this has hit us hard but we're fighting just as our son is. (He's a warrior)
    I'm trying to raise money for the charities that have helped us and also raising money for Casey and to help our situation to be a little better than it currently is.
    We have a lot going on other than what I have written in our GoFundMe page that I'm trying to keep personal but if you would be kind enough to just have a look that would be very appreciated!
    Sorry I'm not great with writing stuff down, trying my best.

    <Removed by mod under forum policy not to encourage exchange of personal details via the forum>


    Here is a link to our personal son's GoFundMe page https://www.gofundme.com/casey-fights-biliary-atresia


    Here is a link for a charity close to our hearts https://www.justgiving.com/fundraising/CaseyBonney

    Here is a link to Children's Liver Disease Foundation that helps explain the basics of Casey's condition. It does also have a more in depth leaflet you can download. https://www.childliverdisease.org/In...iliary-Atresia


    I will also be doing my best to raise awareness for this rare condition because many families had Doctors send them home because the Doc didn't know what to look out for!

    Thank you from us all!! <3
    Last edited by MySonCasey; 18-4-17 at 16:05.
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  2. #2  
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    Bump.

    Stay strong!
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  3. #3  
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    Bless the little man. It's a great thing you're doing mate. These kids are tough as nails, got to keep positive man, all the best.
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  4. #4  
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    Would it be ok if those of us who wish to share the links on social media?
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  5. #5  
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    Heart breaking. You have a beautiful little boy! Stay strong mate, I'm sure he's a fighter.
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  6. #6  
    TheRiedle is online now First team regular
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    Really feel for you mate. You have a strong young boy, please stay strong.
    ?
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  7. #7  
    kickthetyres is online now LFC Forums Moderator
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    Quote Originally Posted by rhoscoch View Post
    Would it be ok if those of us who wish to share the links on social media?
    Share away, I can't see any problem with that.
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  8. #8  
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    Thank you very much all. Please if you wish to share links or even make your own posts to help the rare disease become more known that would help very much.
    Some children have needed a liver transplant without the option of having an operation called the Kasai procedure because of doctors not knowing the signs to look out for early on in the babies life (before 8 weeks)
    Our baby boy may end up needing a transplant but it doesn't matter because I believe whatever gets thrown at him he will come out the other end stronger than ever!!
    Again thank you!

    Sometimes all it takes to give people strength is kind words... Love to you all <3
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  9. #9  
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    Thoughts are with you, your family and young Casey - saw a couple of comments on one of the links you gave, MySonCasey, and the one from the one lady who had a child with the same condition but who has now recovered after having the Kasai procedure (almost completely, it would seem), must surely give you guys a lot of hope. Am truly hoping for a similar outcome here for Casey.

    YNWA.
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  10. #10  
    Red-And-Proud is online now First team regular
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    Sorry to hear this, keep us updated, sending positive thoughts to hope your little one can recover.
    Klopps beard twin
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  11. #11  
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    Quote Originally Posted by grenny158 View Post
    Thoughts are with you, your family and young Casey - saw a couple of comments on one of the links you gave, MySonCasey, and the one from the one lady who had a child with the same condition but who has now recovered after having the Kasai procedure (almost completely, it would seem), must surely give you guys a lot of hope. Am truly hoping for a similar outcome here for Casey.

    YNWA.

    Yes it really does and I have been searching out other's that have had a good outcome...it helps!
    Thank you so very much for the kind words grenny! YNWA
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  12. #12  
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    Quote Originally Posted by Red-And-Proud View Post
    Sorry to hear this, keep us updated, sending positive thoughts to hope your little one can recover.
    We have to go back to the specialist hospital on the 24th. We're hoping for some of our worries to fade a little but we don't know.
    I'll post an update when we get back

    Thanks mate <3
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  13. #13  
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    Here is a link to Children's Liver Disease Foundation that helps explain the basics of Casey's condition. It does also have a more in depth leaflet you can download.

    https://www.childliverdisease.org/In...iliary-Atresia
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    Can't imagine what you must be going through mate, me and the wife get concerned if our little one as much as gets a cold!

    Hope you raise what you need
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  15. #15  
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    Quote Originally Posted by BrummieRed View Post
    Can't imagine what you must be going through mate, me and the wife get concerned if our little one as much as gets a cold!

    Hope you raise what you need
    You just have to mate as best you can, we just try and keep busy. Thanks mate!
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  16. #16  
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    Myself and the missus now have a place in The Great North Run which takes place in September.
    We're doing it to raise awareness and to raise money for The Sick Children's Trust & Children's Liver Disease Foundation

    YNWA
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  17. #17  
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    I've only just found this thread and read the story - great news that he's had his operation and (hopefully) is on the mend. I can't begin to imagine how tough something like this must be on all of you, I have an 11 month old son and the thought of anyone going through this sort of experience is heartbreaking.

    Are you still fundraising now or just raising awareness for the condition itself? Good luck with the run!
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  18. #18  
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    Quote Originally Posted by ILoveLamp View Post
    I've only just found this thread and read the story - great news that he's had his operation and (hopefully) is on the mend. I can't begin to imagine how tough something like this must be on all of you, I have an 11 month old son and the thought of anyone going through this sort of experience is heartbreaking.

    Are you still fundraising now or just raising awareness for the condition itself? Good luck with the run!
    It's tough, you think you're coming to terms with a lot of things and then the next minute it's unbearable to say the least.
    We're taking time out for a little while to give our heads a rest (docs orders)
    Our son will more than likely need a liver transplant at some point, some who have biliary atresia have one as a baby and some when they're 10,15 or into their adulthood.
    They don't always tell you this so you have some families thinking their child won't need one because they have reached a certain age.
    The understanding of this rare liver disease needs to be much better.. they don't even know what causes it which is a real problem. How can it be prevented without knowing this?
    So yes raising awareness is huge for me but myself and the missus have to take a chill pill for now.
    Our baby boy isn't doing as good as he could be, he's back to having really pale stools and the yellowness isn't going away.

    if you have spare money to give to the charities mentioned then please do so even if it's not through any links I provide.
    We're also excepting help if you wished to give a little through the GoFundMe page although I'm not sure how long I'll let that be the case because it's just hard for me to except things like that.

    Thanks ILoveLamp YNWA
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  19. #19  
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    wish you and your son all the best ..hope he gets well
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  20. #20  
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    Quote Originally Posted by johnj147 View Post
    wish you and your son all the best ..hope he gets well
    Thank you John!
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  21. #21  
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    Just picked up your thread...

    My heart melts where children are concerned as I have two young daughters and I want to wish you every strength and pray that your son gets the treatment and a full recovery.

    YNWA

    Love and best wishes from Asia & Africa (my homes).
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  22. #22  
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    Quote Originally Posted by DAKOP View Post
    Just picked up your thread...

    My heart melts where children are concerned as I have two young daughters and I want to wish you every strength and pray that your son gets the treatment and a full recovery.

    YNWA

    Love and best wishes from Asia & Africa (my homes).
    Thank you DAKOP! It's really not fair that babies get this poorly is it but in any case he will be fine in the end!

    Again thank you from myself and my family.
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  23. #23  
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    Just want to say thank you to Aylesbyred from myself, Annemarie, Bella-Rose & Casey. Very much appreciated honestly!!

    Just a little update: We haven't long been to Casey's appointment and they're a little concerned that the whites of his eyes are still very yellow etc. His stools have gone back to being pale too...
    That's not to say he needs a transplant asap because things could go better. They originally told us it could take 4-5 months after the Kasai operation before they know for sure if it's worked.
    Some babies have gone on to be fine until there 20's before needing a liver transplant, that's what we're hoping for.
    Hopefully better news with his next appointment!!
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  24. #24  
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    Quote Originally Posted by MySonCasey View Post
    Just want to say thank you to Aylesbyred from myself, Annemarie, Bella-Rose & Casey. Very much appreciated honestly!!

    Just a little update: We haven't long been to Casey's appointment and they're a little concerned that the whites of his eyes are still very yellow etc. His stools have gone back to being pale too...
    That's not to say he needs a transplant asap because things could go better. They originally told us it could take 4-5 months after the Kasai operation before they know for sure if it's worked.
    Some babies have gone on to be fine until there 20's before needing a liver transplant, that's what we're hoping for.
    Hopefully better news with his next appointment!!
    Fingers crossed mate .

    YNWA .
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  25. #25  
    aylesbyred is online now First team regular
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    Quote Originally Posted by MySonCasey View Post
    Just want to say thank you to Aylesbyred from myself, Annemarie, Bella-Rose & Casey. Very much appreciated honestly!!

    Just a little update: We haven't long been to Casey's appointment and they're a little concerned that the whites of his eyes are still very yellow etc. His stools have gone back to being pale too...
    That's not to say he needs a transplant asap because things could go better. They originally told us it could take 4-5 months after the Kasai operation before they know for sure if it's worked.
    Some babies have gone on to be fine until there 20's before needing a liver transplant, that's what we're hoping for.
    Hopefully better news with his next appointment!!
    God bless you and your family mate #manhug
    dont look back in anger.
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  26. #26  
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    Quote Originally Posted by redhoops View Post
    Fingers crossed mate .

    YNWA .
    Thanks hoops YNWA
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  27. #27  
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    Quote Originally Posted by aylesbyred View Post
    God bless you and your family mate #manhug
    Man hug back at you mate
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  28. #28  
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    Thank you very much to Rhoscoch! Very much appreciated for many reasons


    Unfortunately our baby boy had to go Alder Hey hospital Monday night. He had a high temp so we took him, he's still their now.
    They took his bloods and gave him an ultrasound and told us he has an infection in his bile ducts. Cholangitis was mentioned... he's on antibiotics and is having more bloods done today.
    When I know more I'll post an update. I hope he doesn't end up needing a liver transplant this early after going through the other operation, we haven't really come to terms with it all yet.

    We fight on...

    YNWA
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  29. #29  
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    Stay strong, mate.
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  30. #30  
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    My prays and thoughts are with your young lad.

    YNWA.
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