Please help baby Kaan - infantile hypophosphatasia
Rare condition- Infantile hypophosphatasia.Bay of Plenty
My beautiful 1 month old son Kaan has been diagnosed with an extremely rare condition infantile hypophosphatasia, he is the only person in NZ with this condition.
Without treatment, Kaan has been given 4-6 months to live.
Treatment for this condition is not funded in New-Zealand, we have applied for a grant but are told it is unlikely we will receive it. My baby boy has only just started his life and now needs 100k a year just to keep him alive!
He has very low phosphate which means he has extemely weak bones that without treatment will not be able to handle growing or supporting his body as he grows himself- this is fatal.
He is currently in starship hospital where they are desperately trying to bring his calcium levels down but this is just a temporary fix.
This has been extremely hard on me and my young family (Kaan has 3 siblings that absolutely adore their little brother). It will be a hard road ahead but I will not stop fighting to get my little boy the chance at life he so deserves! It has broken my heart to hear that I may not be able to afford to keep my child alive! But he is strong and we wont give up on him.
Any and all support would be so gratefully appreciated by myself and our entire family.
Use of funds
All funds will go primarily towards funding Kaans treatments as well as travel to and from starship and helping to support his parents and siblings while they fight for his life.
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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This page was created on 20 Jul 2019 and closes on 16 Apr 2020.