Just Like Me!: A Book About A Girl with a Rare Disease - Tapa dura

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While raising her healthy first son, Philip, Anne Rugari lost a second son, Nick, to Krabbe disease in 1987. He was only a year old when he passed away . Anne knew, as she expected her third child in 1999, that the baby should be tested at birth for Krabbe disease, a genetic disorder. Baby Gina tested positive and received an umbilical cord blood transplant at just three weeks of age to give her the missing enzyme she needed to thrive. Gina Rugari was a pioneer in the Krabbe world of medicine and research and considered a miracle child. She lived to the age of fifteen, 14 years longer than her brother, Nick. During her lifetime, she couldn't walk and used a computer to talk, however, Gina was cognitively appropriate at every age. Gina attended school through her freshman year of high school, participated in her community, enjoyed swimming, travelled all over the country and was proud to be a Girl Scout for 10 years of her life. As her disease progressed to her peripheral nervous system, Gina lost her battle with Krabbe in the summer of 2015. From Anne's experiences with Krabbe disease and the loss of two of her three children she has used her talents to create awareness and advocacy about this rare disease. Anne founded Partners For Krabbe Research in 2012, has written and published her first children's book, co-founded a second non-profit for Krabbe disease in 2017, and is currently writing a more comprehensive book about her life with Gina and Nick. Anne supports research by funding and working with scientists, researchers and clinicians all in the hope of changing the outcome of people and families affected by this rare disease.