St. Joseph’s Children’s Hospital Patient Visits Capitol Hill to Urge Congress to Prioritize Health Care for Medically Complex Kids

June 23, 2023
A man, woman and toddler who are a family are standing with a view of the U.S. Capitol building in the background. The toddler is a boy and is in a stroller. It is sprinkling and the mother is wearing a poncho and father is holding an umbrella.
Emily and Gabriel Calcines with their son, 3-year-old Luke, in front of the U.S. Capitol.

 

This week, 3-year-old Luke Calcines of Tampa and his family joined more than 40 other pediatric patients from across the nation on Capitol Hill to speak out on behalf of children with complex medical conditions and encourage Congress to safeguard health care coverage for kids. 

At just 2 days old, Luke was diagnosed with a rare blood vessel abnormality inside the brain known as Vein of Galen Malformation. The condition is a massive tangle of blood vessels that causes a super-highway of blood flow, putting major stress on the heart. As a result, he was in critical heart and respiratory failure immediately after birth. He spent the first nine months of his life hospitalized and has undergone five surgeries to correct blood flow through the malformation.

His family traveled to Washington, D.C. with BayCare Government Relations Director Jason Rodriguez, BayCare Government Relations Manager John Learn, St. Joseph's Children's Hospital President Sarah Naumowich and St. Joseph's Children's Hospital Communications Strategist Amy Gall as part of the Children’s Hospital Association’s annual Family Advocacy Day.

The trip included one-on-one meetings with U.S. Senator Marco Rubio and U.S. Representatives Kathy Castor, Laurel Lee and Anna Paulina Luna, as well as staff from the offices of U.S. Senator Rick Scott and U.S. Representatives Gus Bilirakis and Scott Franklin. Luke also spent time with other children during a celebratory dinner to honor the Family Advocacy Day participants

“We are fortunate that Luke can see the majority of his specialists in the Chronic Complex Clinic at St. Joseph’s Children’s Hospital,” said his mother, Emily Calcines. “But there are 20,000 medically complex kids like Luke in Florida alone, and millions more across the nation.”

Together, St. Joseph’s Children’s Hospital and the family asked Congress to be champions for legislation that would improve how care is delivered to America’s medically fragile children, like Luke. 

“We are grateful to our Tampa Bay lawmakers and Florida’s senators for spending time with the Calcines family and are hopeful they remember Luke’s story when making legislative changes that can improve outcomes for medically fragile children across the state and nation,” said BayCare Government Relations Director Jason Rodriguez. 

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