Tom Zbikowski, or Tommy Z found out about our beautiful Haven from Emily Ries at Under Armour and he sent Haven a autographed photo of him and told her he hoped to see her at a game some day! She was so excited....not that she knows what football is but because Raven rhymes with Haven and Grandma B-Honey loves the Ravens more than anything.
Thank you so much - she can't wait to frame it and put it up on her wall!!!
Learning sustainability for our family and taking care of kids. Becoming a chicken mom in 2020! Our oldest- Haven, 17, was diagnosed with Neuroblastoma Cancer and ROHHAD Syndrome at age 3. We continue to battle these today.
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ROHHAD in Ireland
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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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&...
Hi my name is Maureen
ReplyDeletemy 4 year old was just diagnosed yesturday 12/15/08 with ROHHAD any information or suppoort you could give me would be great im very nervous. her name is Sophia and she is a beautiful angel. my email address is madamo6@hotmail.com