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"One must still have chaos in oneself to be able to give birth to a dancing star."
~ Nietzsche
Scarlett Rose was born on August 30, 2005. Scarlett is our second daughter. Our first daughter, Chloe Isabel (www.chloeisabel.com), flew to the heavens on December 2, 2002. Both of our daughters were born with a rare genetic disease called Krabbe (Globoid Cell) Leukodystrophy. If diagnosed at birth, which is virtually impossible in the absence of newborn-screening (Krabbe is not yet included), there is the possibility of a life saving umbilical cord stem cell transplant. It was too late to save our dear Chloe's life as we had no idea anything was wrong with her until she was about 6 months. Once a child is symptomatic, with brain-stem damage (as was Chloe), it is usually too late for this life-saving treatment. However, our sad story does not end here...with the love and knowledge that our dear Chloe shared with us, we were able to diagnose Scarlett in utero. When Scarlett was just 24 days old we were able to save her life with the miracle of an Umbilical Cord Stem Cell Transplant on September 23, 2005. |
Scarlett Climbs the Stairs
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