Land O' Lakes Girl With Heart Defects Tells Story To Congressmen

LAND O' LAKES, FL -- Amidst throngs of suited, middle-aged lobbyists strolling the halls of the Capitol in Washington, D.C., Hope Dees couldn't help but stand out.

The 13-year-old Land O' Lakes teen, a patient at St. Joseph’s Children’s Hospital in Tampa, was among more than 50 pediatric patients from across the nation to travel to Capitol Hill last week to meet with members of Congress and speak out on behalf of children with complex medical conditions.

Dees was born eight weeks premature, weighing only 3 pounds, 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.

Dees had her first open-heart surgery at just 2 months old, and has since undergone two additional open-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 Dees' mother, Kelly Dees.

During the June 24-27 trip, which was part of the Children's Hospital Association's annual Family Advocacy Day, Dees and her parents, Kelly and Mark, met with Florida U.S. Congressmen Gus Bilirakis, Vern Buchanan, Kathy Castor, Charlie Crist, Darren Soto, Ross Spano and Greg Steube and U.S. Sens. 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 preexisting conditions, such as our daughter," said Kelly Dees.

Together, St. Joseph's Children's Hospital of Tampa and the Dees 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 the 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 decisions regarding children's health care coverage in the future, they will remember Hope's story," said BayCare federal government relations manager Joni Higgins.