St. Joseph’s Children’s Hospital Patient With Complex Heart Defects Spends Time in Nation’s Capital to Urge Congress to Safeguard Medicaid for Kids

TAMPA, Fla. (June 28, 2019) – This week, 13-year-old Hope Dees of Land O’ Lakes, FL joined more than 50 other pediatric patients from across the nation on Capitol Hill to meet with their members of Congress to speak out on behalf of children with complex medical conditions. 

Hope was born eight weeks premature, weighing only 3 pounds and 5 ounces. She was diagnosed with multiple complex health conditions including congenital heart defects, a tracheoesophageal fistula which is an abnormal connection between the esophagus and trachea, and a mild form of cerebral palsy called Spastic Left Hemiplegia. Hope had her first open-heart surgery at just 2 months old, and has since undergone two additional open-heart heart surgeries, several cardiac catheterizations, two orthopedic surgeries and years of physical rehabilitation.

“Hope would not be here today if we didn’t have access to the specialized care she needs from a children’s hospital dedicated to providing kids with the care they require to live their best lives," said Hope’s mother, Kelly Dees.

During the June 24-27 trip, which was part of the Children’s Hospital Association’s annual Family Advocacy Day, the Dees family met with U.S. House of Representatives Gus Bilirakis, Vern Buchanan, Kathy Castor, Charlie Crist, Darren Soto, Ross Spano, Greg Steube and U.S. Senators Marco Rubio and Rick Scott.

“Hope’s complex medical conditions are a part of her story for life, and we hope that sharing her story will inspire lawmakers to continue to provide meaningful coverage for families - including protections for people with pre-existing conditions, such as our daughter,” adds Kelly.

Together, St. Joseph’s Children’s Hospital of Tampa and the family asked Congress to take into consideration the unique needs of children like Hope, who will continue to require critical health care services as they grow into adults, when considering changes to our country's health care laws.

"We are grateful for the opportunity to meet one-on-one with our members of the U.S. Senate and House of Representatives and are hopeful that as they make decision regarding children’s health care coverage in the future, they will remember Hope’s story,” said BayCare Federal Government Relations Manager Joni Higgins.

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