Rachel's Story

Rachel Lynn Smith, the daughter of Danny and Rebecca Smith,was born on January 18, 2005.  In 2006 she became the proud big sister to her brother, Nathan.  At birth Rachel was the picture of health.  It was not until she was two months old that it was discovered that something was terribly wrong with her.  After extensive tests she was diagnosed with an extremely rare blood disorder, Blackfan Diamond Anemia.  There are a number of possible symptoms associated with the disease, but the one that is most notable and common to everyone who suffers with it is the inability of the bone marrow to produce red blood cells.  Until November 2007, Rachel received blood transfusions every 3 to 6 weeks to sustain her life.  This was only a temporary solution since continuous transfusions could eventually lead to organ failure and death.  In Rachel’s case, she would have most likely died in her teens after enduring serious side effects and suffering with a poor quality of life.  Her best option was a bone marrow transplant where her own bone marrow would be destroyed using chemotherapy and then replaced with donated umbilical cord blood instead of actual bone marrow.   Rachel underwent this procedure at Duke University Medical Center in November of 2007 with the expectation of being home and on the way to a full recovery by April 2008. However, due to complications following the transplant, the family had to remain within 10 minutes of the hospital until her passing exactly two years later.  She endured frequent and extended hospital stays. She was admitted for the last time on June 23, 2009 until her passing on November 7, 2009.

Rachel, a fun loving happy child, was a joy to be around and brightened the lives of those who knew her. A wonderful artist, musician and storyteller, she loved to share her talents with everyone she came in contact with. Her greatest talent, though, was making friends.  Anyone who met her immediately loved her.  She had the greatest ability to put a smile on anyone’s face. She always made it a point to make the new children and their families at the hospital feel welcome.  Her passing has left a huge void in the lives of so many.

While her passing has left an enormous hole in the lives of those who knew her, it is our hope that through this foundation her life will continue to make a positive impact on families who have children in similar situations.

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