Rilee

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At the young age of two, Rilee was diagnosed with Aplastic Anemia. Getting that news was pretty devastating and led to needing a bone marrow transplant in 2003. Little did we know, this began a long journey of many questions and few answers.
In 2008, at the age of nine, Rilee was diagnosed with a DC.  On the physical side, Rilee has no fingernails or finger prints and no tear ducts. On the inside she has osteopenia, fibrosis of the liver, restrictive lung disease , and is anemic because of GI bleeding. Rilee gets out of breath easily and is tired all the time. She ended up having a bad virus and uncontrolled bleeding. We have been dealing with her GI issues for the past year. She has had every test known to man.  She had a double balloon endoscopy, a pill that had a camera that she had to swallow to take pictures of her insides, a ct scan, a meckel scan, a liver biopsy, a bone marrow biopsy, and a colonoscopy. She also has many transfusions.
  Her bone marrow is still 100% donor. Her bone marrow is not working like it should and they have no idea why. Her liver biopsy showed that it is functioning like it should. They measure the fibrosis on a scale of 0 to 4 with 0 showing no fibrosis and 4 it full of fibrosis. Her liver is 3-4. With all the tests they still don't know where she was bleeding. What they told us was the most logical, best educated guess. There was no evidence where she was bleeding. Now she's on two medications hoping to slow the bleeding.
Living with a rare disease is very hard. It's frustrating that there is no protocol for her disease. I feel we are learning about her disease along with her doctors.But I'm glad for DC Outreach and now this!