Hello, I was very affected by the story. I am very sorry about your baby! My 6-week-old son also has osteopetrosis. Has your child not been treated? We will most likely have a bone marrow transplant. But unfortunately that has not been decided yet. Please keep your fingers crossed for us...
@RmcDKinderfonds2 жыл бұрын
Thank you for your heartwarming comment. Hopefully your child will recover, we wish you and your family much strength! We're not sure if you can read this, since it's in Dutch, but Jesper - the father in this video - wrote a more extensive story about his daughter on our website: www.kinderfonds.nl/hazel-overleed-op-wereldlichtjesdag
@adventureconstruction26682 жыл бұрын
@@RmcDKinderfonds Thank you for the link. That has answered some questions. I was able to easily translate the whole page into German thanks to Google translator. Then you have recognized quite early that your daughter had osteopetrosis. It is a pity that she did not make it to the transplantation. I had tears in my eyes while reading. I wish you all the best. How our story ends, I or my older son will document in KZbin. The disease is so rare that you can hardly find in German about it. I am looking for people who also had the disease and may have survived.