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.
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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This page was created on 20 Jul 2019 and closes on 21 Oct 2019.