Baby kaan!!
16 January 2020
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 ❤️❤️
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Absolutely delighted to read of Kaan's continuing improvement. So thrilled for all your family, and extended family.
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That's great news! Will be interesting to hear what Pharmac say when the day comes that they want to stop funding.
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That is great news! I love receiving updates on Kaan so I am glad he is thriving.
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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
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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