This is an article written about one of our ROHHAD friends. She lives in Scotland. I wanted to share because there are so few of us and we need support and spreading awareness is the best way to do that!
This is Daniella right after she was diagnosed with ROHHAD Syndrome.
Daniella's problems began at around the age of 2 1/2 - which she started aggressively looking for food. Around Christmas 2010 Daniella fell seriously ill and couldn't walk. After lots of testing they found she was going in to kidney failure and started dialysis....then after suffering heart failure her family feared they would lose her.
Doctors worked hard to find a diagnosis for her and she is doing much better today as she is monitored and cared for 24 hours a day.
We love you Daniella......
Please read Daniella's article in the The Scottish Sun newspaper.
Friday, April 13, 2012
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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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Sometimes I can't believe how our life changed from 2006 to 2007........ How did doctors get it so wrong for so long
In the first picture she looks so much like Haven! They could be twins!
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