HI Everyone.....
Over the past few years of writing Haven's blog we have made many new friends and Haven has a lot of fans out there. That means all of you know about ROHHAD and Neuroblastoma Cancer because you took the time to care for our child as if you really know her. I try to make her blog personal to you so you can connect to her and feel her happiness and sadness and pain and joy. She is precious to us and means the world to us.
As Haven is everything we have, there are more of us out there. More ROHHAD children have been diagnosed over the past year and more have come out to talk and share their stories with us.
I ask that you please check out the "Friends Of Haven" section and read about the children and share their stories. We can only gain recognition of this horrible disease with your help.
Thank you all for helping us take care of our baby and giving hope to all of the families.
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Hi everyone. It's been a long time since I sat and wrote about our daughter's extremely rare disease diagnosis. Literally 15 years a...
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I received this story in my email today. It still shocks me that my daughter has ROHHAD. It's a horrible disease that destroys a child...
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