Disney World return is patient's dream come true

By Katherine Morales

A once-in-a-lifetime dream came true — twice — for a young patient at UT Southwestern.

Jessica Kath of Mesquite was born with a rare genetic disease called Diamond-Blackfan syndrome, a potentially fatal disease that rendered her body incapable of creating red blood cells.

“I was born black and blue and had to have my first blood transfusion when I was only a few days old,” said Ms. Kath, now 22 years old.

Jessica Kath (seated) is surrounded by Disney characters and (from left) her mother, Kristi Kath Davis, her cardiologist, Dr. Mark Drazner, and nurse practitioner Katie Fitzsimmons.

Her health remained fragile throughout childhood — so fragile that her mother decided to contact the Make-A-Wish Foundation, which grants wishes to acutely ill children.

“Ever since I can remember, I’ve loved Disney movies, and I’d always wanted to go to Walt Disney World,” Ms. Kath said. “That was my wish, and the foundation sent me there.”

She was 6 years old, but the magical trip left an indelible impression. She recalls visiting the characters, staying in accommodations at Walt Disney World reserved for kids who visit via Make-A-Wish and getting the “royal treatment” during her stay.

“It was really a perfect experience for me. I knew that if I ever got better, I was going to go back,” she said.

Because of new treatments and the constant support of her family and doctors, Ms. Kath survived and thrived, going so far as to enroll in marching band during high school, “much to the horror of my pediatrician,” she said. After graduation, she attended Stephen F. Austin State University in Nacogdoches, where she happened to see an advertisement for employment at Disney World.

“It was like it was meant to be,” she said. “I knew I’d always wanted to go back, and if I was hired, I could actually work there.”

A few weeks later, she was on her way to Disney World, this time as a full-time employee. She continued her periodic blood transfusions, but they caused her iron levels to skyrocket, which weakened her heart muscle.

During one of her many performances as an entertainer, she collapsed, her heart unable to keep up. One of her last memories of Disney World is of being rushed out on a stretcher into a waiting ambulance — not exactly the exit she wanted to make.

“I was basically diagnosed with congestive heart failure. Thankfully, my doctors knew about UT Southwestern and cardiologists who could help me,” Ms. Kath said.

Dr. Mark Drazner, a nationally recognized heart failure expert and medical director of the Heart Failure and Cardiac Transplantation Program, headed up her care.

“She was not in great shape when she arrived,” Dr. Drazner said. “She’s such a young patient, and it was devastating to see her struggling.”

UT Southwestern cardiologists and cardiothoracic surgeons have access to the newest diagnostic tests and procedures available. In addition, UT Southwestern is a primary testing site for new technologies such as left-ventricular assist devices (LVADs), which can be used to improve heart function for patients with congestive heart failure.

Because of Ms. Kath’s diminutive stature, Dr. Drazner and his team secured a small LVAD called the HeartMate II, by Thoratec. Throughout her recovery, one lingering wish remained: to return to Disney World.

“Dr. Drazner told me that would depend on my health, but he also said that if I went back, he would go with me,” she said.

She held him to that promise and in May, she got the green light to visit Disney World again. Ms. Kath and her mother, Kristi Kath Davis, drove to Florida. Dr. Drazner and nurse practitioner Katie Fitzsimmons flew out to meet them.

“Jessica is a remarkable person,” Dr. Drazner said. “To see someone so young and so gravely ill able to travel and live her life again is unbelievably gratifying.”

But, she said, her second wish wouldn’t have come true without the support of her surgeons and the health care team at UT Southwestern.

“I’m so thankful for them, especially when I think about everything they have done to get me to where I am,” Ms. Kath said. “It sounds funny to say, but they are really my heroes.”

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Dr. Drazner holds the James M. Wooten Chair in Cardiology.