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Please help baby Kaan - infantile hypophosphatasia

  • Not so much a baby anymore 😍

      18 March 2020
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    Heey everyone, I’m keeping this page open to keep everyone updated on baby kaan cause we receive so much donations I want to keep everyone informed about kaan, we do not expect anyone to donate anymore, we just want to keep in touch with everyone. Kaan is doing absolutely amazing, he the best little boy ever he still getting his injection every 2nd day, he now 9 months old wow 🤩 He got the best personality ever he rolling around everywhere now, he still not wanting to take bottle or food yet but that is okay he gaining weight so that out main focus, with everything going on in the world with the new virus my main goal now is keeping kaan safe as his immune system isn’t the best, pharmac is still funding kaan medication, he up for review in May so fingers crossed they continue to fund it for him but if they were to stop funding it we would completely understand considering the crisis that’s going on at the moment! But thanks to you guys we will have enough to fund him his injections. We love every single one of you that have donated to kaan and who has followed him since he was 3 weeks old ❤️

      3 comments  |  Login to leave a comment

    • 19/03/2020 by Jeni

      I’m so impressed with you.....keeping us informed even when donating isn’t necessary is great.

      He is a gorgeous wee boy and looks very happy and loved.

      I know you will keep him safe and I look forward to your next update. Best wishes Jeni.

    • 19/03/2020 by Phyl

      What a gorgeous, happy little man Kaan is. Congratulations on all your hard work to have him looking so well and happy. Prayers that Pharmac will continue funding his medication, and blessings on you for being so willing to forego this funding if necessary. Thanks for the update, please continue them.

    • 19/03/2020 by Chris Buckley

      Kia ora Tracey, I'm so pleased to hear how well Kaan is doing! I think your story touched so many people, and I'm so grateful to you for continuing to update us all. We truly care for you and yours, and that doesn't stop with a donation - so it's wonderful to get these updates.

      Kaan looks like he's doing so well! I'm over the moon for you and your family, what a gorgeous wee fella.

      Kia kaha, & arohanui x

  • Baby kaan!!

      16 January 2020
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    Hey everyone, so update on baby kaan he 6 months wooow time has gone to fast!! He still getting his injection every 2nd day and this drug is a miracle drug it saved his life! Yay!! Pharmac are still funding it we not sure for how long as we have to keep reapplying but we staying hopefully the drug is over $20000 a month, so all the money we have raised is in a bank account for kaan for when they stop funding it we can get him some more cause we been told they won’t fund it forever which is completely understandable but when they stop we be ready causes thank to you all On a brighter note kaan doing amazing he is thriving this boy so happy!! He rolling started eating a bit of food! Always smiling and laughing he the happiest boy ever! Thank you to everyone that has donated to kaan us as a family are so blessed by you all ❤️❤️

      5 comments  |  Login to leave a comment

    • 16/01/2020 by Joy

      Absolutely delighted to read of Kaan's continuing improvement. So thrilled for all your family, and extended family.

    • 16/01/2020 by Ted

      That's great news! Will be interesting to hear what Pharmac say when the day comes that they want to stop funding.

    • 11/02/2020 by Lauren

      That is great news! I love receiving updates on Kaan so I am glad he is thriving.

    • 14/02/2020 by merve

      Hello beautiful kaan, hello beautiful family!

      I'm Merve, from Turkey. My little brother(12) is also suffering from hypophosphatasia. As you know, the treatment process is very difficult because the drug is very expensive. So I set up an health association for patients like my brother in Turkey. I want to research the stories of all patients suffering from this disease. I saw kaan while researching the news. kaan is a very beautiful baby, I wish you a very long and beautiful life. I want to announce your story, so I want to put kaan as a news at http://hifoder.org/ if you allow.

      You can send an e-mail to m-acarr@outlook.com to contact me.

      Yours truly

    • 19/03/2020 by Emma

      It is so nice to hear that Kaan is doing so well. He is such a gorgeous wee boy. Wishing you and your family all the best x

  • Update for baby kaan!

      12 September 2019
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    Heeey everyone!! Just a update to let you know how baby kaan is getting on, he is now on the injection he get it 3 times a week, will maybe have to go to 6 injections a week as he gets a little older as the injection site gets quite painful so they are just giving him 3 at the moment he handling it like a pro :D he doing very well, starting to build such a personality now starting to giggle it’s so cute!! We still have such a long road ahead of us the doctors are looking at doing a bone marrow transplant once he gets a bit older, but still a little while to go, will get everyone update thank you to each and ever one of you to have donated Xxx

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    • 12/09/2019 by Karen

      Thanks so much for the update. Wonderful to hear that Kaan is giggling!! Sending love and positive wishes to all of you. x x x

  • ❤️❤️❤️

      22 August 2019
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    Hey everyone, I just wanna take the time out to say to you all how great full and so loved by each and ever single one you, You are all wonderful people and I appreciate your love, kindness, support, and generosity. Thank you! As you all know that we got the news that $10000 wasn’t quite enough for kaan treatment, and we honestly didn’t want anymore people to donate as we already got so much from everyone and we felt that Nz and the world already did so much for us so thank you all again who continue to donate You all have inspired us during this difficult time You cannot imagine how much strength your support has given me during this difficult time. Thank you for your thoughtfulness and your words of encouragement to everyone that has reach out donated to kaan, the funds will be put in kaan own bank account till we know more about this medication process and about the funding, we should hopefully no more within the next few weeks we have along road ahead of us and I will be sure to keep you all update!! Much love to every single one of you ❤️❤️❤️

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    • 22/08/2019 by Rick

      Tracey and Matthew , I hope everything works out and baby Kaan gets to have an awesome Kiwi upbringing !! When I first read of your plight , I thought , " No way can they fight for that baby`s life without good old Kiwi help !!" I`m so glad the funding was enough . Let us know if you need more please. Love and hugs R. Oliver.

  • We are all so truely blessed

      31 July 2019
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    As I sit here writing this I am in tears happy tears of course, I can’t even put in to words how I wanna thank each and everyone of you for donating to baby kaan you have all given us hope! You are all amazing I wish I could meet everything just to thank you all, we are absolutely blown away!! Thank you all so much ❤️❤️

      4 comments  |  Login to leave a comment

    • 01/08/2019 by Tracy

      All the very best Tracey xx

    • 01/08/2019 by Sarah

      I am so pleased you have nearly managed to raise all the funds! Xx

    • 01/08/2019 by Lesley

      Yay you made it 😀😀😀 so happy for your family and that little kaan can now get the medication he needs xx

    • 01/08/2019 by Tracey Roberts

      You guys are all so amazing!! ❤️❤️ I’m super proud to be a kiwi thank you all so so much!

  • Update for kaan

      29 July 2019
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    Hey Everyone, I’m just updating everyone to let you know that the funds will be paid out to my husband kaan dad Matthew, as I don’t hold a current Driver’s license so don’t have photo id. Thank you all so much for donating to baby kaan! We are nearly half way there how amazing is that 😁😁 And will keep everyone updated about everything.

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    • 29/07/2019 by Rehua Bryan

      Get well quickly little man. Love to all your family

    • 29/07/2019 by Tracey Roberts

      Thank you all so much!!

    • 01/08/2019 by Tracy

      Awe super proud Daddy and brother xx

  • We are home 😁😁

      28 July 2019
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    Baby kaan is now home, he is being closely monitor by the hospital has to have bloods twice a week but we getting there everyday! We still hold on to hope the funding comes though won’t know for a few weeks yet but will let everyone no when we do! Thank you all so much once again ❤️

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  • Thank you so much everyone!!

      24 July 2019
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    From the bottom of my heart and baby kaan we can not express how great full we are for everyone donations and support we have hope now thanks to you all words can’t express what we are all feeling because of everyone of you we are feeling so loved from everyone all over the world! Thank you all so much ❤️❤️

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