Monday, March 5, 2012


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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