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Longboat Key Tuesday, Jan. 7, 2020 8 months ago

Longboat Fire Department provides holiday surprise for child with CHARGE syndrome

Staff gave many gifts, and a visit from Santa, to 3-year-old Lili and her mom, Katrina, as part of an annual tradition
by: Brendan Lavell Staff Writer
Katrina Michel (right) holds her daughter, Lili, on Dec. 21 at Nathan Benderson Park. Lili has CHARGE syndrome, a disorder that has her caused her to be deaf, blind in one eye and unable to walk

Katrina and Lili Michel thought they were having a normal day at Nathan Benderson Park. It was a reprieve from the many days filled with trips to Lili’s therapy sessions, but a normal day nonetheless.

That is, until Santa Dezzi and the Longboat Key Fire Rescue Department showed up.

Fire Chief Paul Dezzi, dressed as Santa Claus, and members of the department surprised Katrina, 27, and Lili, 3½, at Benderson Park on Dec. 21 to help provide a Christmas celebration.

Longboat Key Fire Chief Paul Dezzi, dressed as Santa Claus, greets Lili Michel while Lili's mother, Katrina, holds her on Dec. 21 at Nathan Benderson Park.

Lili has CHARGE syndrome, a condition that can lead to a variety of health problems in each individual, according to the U.S. National Library of Medicine. In Lili’s case, the disorder has caused her to be deaf, blind in one eye and unable to walk. She has had 17 procedures in the last three years and receives her food via a feeding tube every two hours. Katrina has moved in with her parents so she can fully commit herself to giving Lili the 24/7 care she needs.

The fire department worked with Katrina’s mother, Joy, to keep the visit a surprise. Through Joy, the department learned that light-up toys and a wagon would be among the best options as gifts for Lili and that Katrina wanted a blow dryer and hair straightener. As a group, the fire department staff chipped in and bought both hair products, a “Christmas gift card tree” featuring certificates for gas, Publix, Target, etc., several light-up toys, baby wipes and more. And of course, Santa Dezzi dropped in for a surprise visit.

Longboat fire department staff poses with Lili and Katrina Michel. From left to right: Grayson Adams, Paul Dezzi, Sandi Drake, Olivia Carr, Joy Stevanovich, Lili Michel, Katrina Michel, Jane Herrin, Tina Adams, Nick Disalvo

Finding a local person or family on Longboat Key to assist has become an annual holiday tradition for the fire department. Katrina and Lili technically live in Sarasota, but Katrina’s mother, Joy, heard about the department’s attempt to find someone who could use some holiday help while working at Longboat’s Players Club.

If the department doesn’t find someone on Longboat, it often gets creative. Last year, staff attended Face Autism’s “Sensory Santa” event in Sarasota, presenting each child with a new teddy bear.

Lili Michel sits on the leg of Longboat Key Fire Chief Paul Dezzi on Dec. 21 at Nathan Benderson Park.

“It’s a time about giving,” department liaison and public information officer Tina Adams said in an email. “We couldn’t imagine not helping out and giving to someone that may be less fortunate or simply not in a good place at the time and needs some assistance getting back on track.”

Brendan Lavell is a general assignment reporter for the Observer. He earned degrees in journalism and history at the University of Missouri. He has visited 48 of the 50 United States, has a black cat named Arya and roots for the Eagles, Flyers, Phillies, 76ers and Chelsea FC.

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