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Stephen Angelo Monaco was born on October 26, 1997. Due to lack of comprehensive
newborn screening, Stephen’s inherent metabolic disorder, Isovaleric Acidemia, went
undetected, and he appeared to be a normal, healthy child. At age three and a
half, within a 24-hour period, he suffered a life threatening metabolic crisis that
resulted in severe brain damage, leaving him as a severely disabled child with
complicated medical issues. Caroline Elizabeth Monaco was born on September 20,
2002. With the knowledge gained from her brother Stephen and his disorder,
Caroline was tested in utero and was confirmed to have the same metabolic disorder,
Isovaleric Acidemia. Doctors prepared for her arrival to give her a chance for a
healthy start in life. With proper diet management and medications, she is leading
a normal, healthy life. While Stephen has made some progress, he continues to require
extensive medical care. Ongoing therapies provide Stephen optimum opportunities to
develop to his maximum potential.
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