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Evacuating during Ian a concern for family of young girl with rare disease

tampa medical device
Posted at 3:13 PM, Sep 29, 2022

Hurricane Ian forced tens of thousands of Floridians to evacuate their homes and left more than 2 million people without power.

Families were forced to make a choice: board up and get sandbags to stay, or to evacuate. But evacuating to safety is not so easy for some families.

Lordyn is almost 8 years old. She has Fanconi anemia, a rare blood and bone marrow cancer.

“Sadly, it's a terminal illness, so there's no cure at all,” her mother, Diane Ventrice, explained.

Just months ago, Lordyn and her family moved to Florida to go to a special school for children with cancer.

This is the first hurricane they've been in the middle of and the first time they've been trapped, with no choice but to ride out a life-threatening storm at home.

“We're safer here with less germs, less, you know, issues instead of a big setting,” Ventrice said.

Sick children like Lordyn, and their families, are often left out of emergency plans—shelters can be a high infection risk and transporting medical devices can risk damaging life-saving equipment.

“If they're hooked up to machines, that, that's a rough thing to try to evacuate with all that equipment,” Ventrice said.

But electricity is the biggest concern.

“She has a feeding tube which needs, obviously, electricity and we're just waiting for that to disappear,” she said.

The feeding tube can function for a day or two without power, but then, it'll be dead and Lordyn will lose nutrition.

This fear is one advocate Holley Wade lived firsthand when she needed to evacuate her young son, Daniel, who had brain cancer.

“He was actually getting chemo in the hospital as the hurricane was making landfall,” said Wade.

She realized there was no program in place to assist families with sick children in emergencies like hurricanes.

Years later, she's worked to make assistance available for some families, but most still have no lifeline.

“If it's not something that's in front of you every single day, it tends to get forgotten,” said Wade.

The Ventrice family want to send the message that we all should remember the challenges our most vulnerable face in natural disasters.

“They are the tiniest and the most fragile, and they depend on us as adults to make sure that they're safe, so it takes a village,” said Wade.