Well it's time for me to get back to the life I try to imagine we don't live.....a life of childhood cancer and ROHHAD Syndrome. After a few months of living here I believe we are about to find the doctors to keep our daughter strong through her fight. She is a chemo treatment behind but we know she will make it until we can get it. We have researched pulmonary doctors and endocrine doctors and to have her enjoy a childhood that requires her to travel 5 hours each way every few months is worth it.
To all of our friends and families battling ROHHAD Syndrome - we love you and although we have stayed away for a few months we are on the way back. Thank you for keeping Haven in your thoughts.
Here is a special video made of our beautiful ROHHAD children....
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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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