2013 Families

In 2013, multiple families will travel to D.C. to participate in Family Advocacy Day and advocate on behalf of Boston Children’s Hospital. Here, we share their stories.

Read the blog archive from our 2012 families.

Lauren (Massachusetts)

LaurenAs an infant, Lauren was diagnosed with cystic fibrosis (CF), a genetic disease which mostly affects the lungs. Lauren, however, does not let CF slow her down. She is a cheerleader and dancer and also enjoys spending time around horses, whether it’s riding or volunteering at Bina Farm, an equine assisted activity and therapy program for adults and children with physical and developmental needs.

Lauren spends multiple hours a day managing her CF and is occasionally admitted for extended hospitalizations at Boston Children’s Hospital for more intense treatments. Fortunately, Lauren’s family has MassHealth (Medicaid) to provide premium assistance toward their private insurance and assist with the copayments for Lauren’s treatments and medication. Lauren reports that her experience with CF has been rewarding: “Having CF has taught me to overcome challenges and has introduced me to so many wonderful and supportive people over the years,” she says. “I wouldn’t change that one gene for the world.”

Thomas (New Hampshire)

Thomas VincentThomas was born on Thanksgiving Day 1996; hours after birth, he was taken to Boston Children’s Hospital for emergency surgery to treat bladder exstrophy, a rare congenital birth defect in which part of the urinary bladder is outside the body. When Thomas was one year old, his family moved to the seacoast of New Hampshire. There, his grandparents had a huge influence on his childhood. Growing up, he played soccer, basketball and baseball. He also enjoyed playing video games and making forts with his older brothers, Daniel and Nathan. Over the years, Thomas had several more surgeries at Boston Children’s Hospital, most recently in eighth grade. Today, Thomas is a junior in high school and is involved with athletics, community services and a variety of school clubs. His favorite subject is chemistry. His dream is to play soccer, but he also hopes to attend medical school in Boston.

Riley (Maine)

Riley CerabonaRiley is courageous, resilient and loves to read, sing, act, pet her cats and spend time outside. She was born with a rare, progressive disease called CLOVES syndrome, which causes overgrowth of benign lesions. In Riley, most of these lesions have been in and around her spinal cord and have caused leg weakness and paralysis in her left arm. The level of coordinated, specialized care that Riley requires is not available at home in Maine, so her family travels frequently to Boston. She has had 16 major surgeries, more than 40 MRIs and is part of a year-long clinical trial at Boston Children’s Hospital. Though Riley has private health insurance through a family plan, MaineCare (Medicaid) provides assistance with copayments and physical and occupational therapy visits that may exceed what private insurance would cover. Given her complex care, this is critical to the family’s ability to maintain the level of health care that Riley needs.

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