Noreen was born March 18th, 1999. That's right - she just celebrated her 11th birthday YESTERDAY! Noreen lives in the Netherlands with her family and was diagnosed with ROHHAD Syndrome.
When I first started talking with her mother she was reasearching and trying to find out everything she could - like many of us. You are given a disease you've never heard of and neither has anyone else. Noreen has done great this year. She got a new bike and has lost 13 pounds! Amazing for any ROHHAD child. I sure wish I could figure out her secret!
Noreen wears a nasal cannula at night to help with her O2 levels.
Noreen now wears a wrist-pulse that checks her oxygen and heart rate 24 hours a day. She will go back in for another MRI this May and we'll get some updates from her mom. Their family is also in the process of planning their summer vacation to Portugal!!!Have a great Summer Noreen -- WE LOVE YOU - Have a great birthday! We'll bug mom for some pictures of your vacation!
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