Rilee's Roundup

This site is for my niece Rilee.  When she was 2 years old she was diagnosed with Aplastic Anemia, which is bone marrow failure.  She received a non-related bone marrow transplant when she was 3 years old.  Everything looked good at her annual dr's visits until she was 8 yrs old when she was diagonsed with Dsykeratosis Congenita. Dyskeratosis congenita (DC)  is an extremely rare, genetically inherited multi-symptom disorder (it is estimated to occur in one out of one million people worldwide).  Rilee's symtoms include fragile bones, restrictive lung disease and she is anemic, just to name a few.  There is no cure for DC, which means many, many doctors visits to try and keep her symptoms under control and try to figure out the best way to keep her healthy.

Rilee was recently in the hospital due to complications from the flu. She has been experiencing a rapid heart beat and lung issues, which led the doctors to perform a cardiac procedure (to look at the veins in her heart and lungs).  Unfortunately, with DC there are always more questions than answers as was the case this time.

This is the part where I say what a wonderful, nice, funny kid she is, and she is all that.  She is also a 15 year old teenager dealing with a devastating disease that we can't understand, let alone try and explain it to her.  Her parents have done an amazing job not letting her know the financial struggle that having a "sick" kid means and my hope with this site is to alleviate some of the stress that goes with having a chronically ill child.

https://www.dcoutreach.org/