Jana and Tom Monaco
08-Aug-07 |
| Jana and Tom Monaco of Woodbridge, Virginia, turned a family crises in to a personal crusade for newborn screening. Third son Stephen was born with a lusty cry of a healthy newborn baby. But at 3 ˝ years old, a stomach virus triggered an undetected genetic metabolic condition which left him severely disable. Five years later, his sister Caroline was treated at birth for the same condition, Isovaleric Acidemia. Now an energetic four year-old, she helps tend her brother. The Monacos, now the poster family for newborn screenings, were a leading voice in advocating for Virginia’s now mandated 29 screenings. Jana also works on a state and national level and is an appointed member to the HRSA Advisory Committee for Heritable Disorders and Genetic Diseases in Newborns and Children, and she is a family faculty member for the Children’s National Medical Center LEND Program. (Leadership Education in Neurodevelopmental Disabilities). For more of their story and concerns, check out their web site www.stephenmonaco.org, and review the attached web link http://news14.com//Default.aspx?ArID=585670 |
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