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.
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.
Not so much a baby anymore 😍 18 March 2020
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 ❤️