“And Then Everything Changed” – One Family’s Fight Against A Rare Disease

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Courtney and Steve Boutin live in Fletcher. In 2009, they were ready to welcome their third daughter to the family. Addie was 6, Lily was 4 and Isabella was born in July of that year at Fletcher Allen Health Care in Burlington. In the three and half years since, the Boutins have learned what it’s like to have a child with a rare and deadly disease, Urea Cycle Disorder, and how to survive the experience with a strong family intact. Courtney and Steve Boutin recently came to the VPR studio to tell Vermont Edition the story of how a liver transplant saved their toddler’s life.

Note: Throughout Isabella’s illness, Courtney Boutin kept a blog to inform and update friend and family about UCD and Bella’s prognosis. Read Courtney’s blog here.


See a few family photos from the Boutins

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