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Juliette's Journey of Healing and Hope
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Manage episode 284053590 series 2448731
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Marti Jaenke Dexter tells the story of her youngest daughter of four children, Juliette, described sweetly as her "gift from God." She was born on July 9, 2003 with two rare genetic conditions, Pierre Robin Syndrome and Moebius Syndrome. Though one required surgery as an infant, Juliette had a happy, healthy childhood and social life. She was diagnosed in 2014 with Myelodysplastic Syndrome (MDS)with a very high probability of developing leukemia; the discovery of bone marrow fibrosis was tragically not in her favor for treatment. The family did not give up hope and went through a Cord Blood Transplant which unfortunately failed. Her second transplant that December resulted in GVHD to which she ultimately succumbed. Juliette left a legacy of healing and hope with her family which you may follow at "Juliette's Journey of Healing and Hope," on Facebook. Marti plans to publish a journal book for children inspired by this journey, a tangible gift of their forever bond. Our advocacy segment focuses on H.R.6556, legislation that supports the NIH Kids First Research Database, a crucial source of information and clues for the medical community of rare genetic pediatric disease and pediatric cancer.
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