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  1. Local Weather

Group with rare disorder get scare when power fails at Don CeSar, but stay upbeat

ST. PETE BEACH — Outside the iconic hotel, the storm howled. The rain pounded the roof and the wind punched the windows. Inside huddled a group of special guests at the Loews Don CeSar Hotel.

Special, because 40 of them have Barth syndrome, a rare genetic mutation that often means compromised immune systems, digestive problems and heart failure. It only affects males. Only about 150 people in the world are diagnosed with the disorder.

Families came to St. Pete Beach from around the world to meet others with the condition and connect with scientists and doctors.

About half of those with the disease who attended rely on constant medications and formulas that have to be kept cold.

The hotel was ready. Staff gave each patient his own fridge to keep his expensive drugs and formulas below 37 degrees.

On Sunday night, organizers of the Barth Syndrome Foundation conference were in the middle of a meeting, trying to stay focused. Sirens screamed outside.

About 8:15 p.m., the lights flickered and went out.

Families gathered in the lobby, where generators kept the electricity flowing.

"A lot of people with a life-threatening disorder would be bummed out and depressed and grim," said board member Kate McCurdy.

But that wasn't the case.

"It was like a little party," said Brie Kalapasev, 40, the mother of a 2-year-old with a transplanted heart.

"The families were so positive," said organizer Shelley Bowen. "They were smiling, not complaining."

But with the power out, the refrigerators would only stay cold for so long.

Bowen and hotel officials scrambled to keep the medicine cold. They could use the kitchen fridge, but then the families wouldn't have easy access to the life-saving drugs. They could move fridges into the ballroom, but then someone would have to guard them and log every request.

Time was running out.

Almost 13 hours later, they had decided to move a handful of fridges to an accessible, more private storage room that was getting some of the coveted electric juice.

Then suddenly, the lights came back on. Crisis averted.

"We got power, baby!" Bowen said.

She did a dance.

Alli Langley can be reached at alangley@tampabay.com.

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