MANATEE COUNTY — She’s only 6 years old, but already, Kaylah Gunst is flexing some political muscle in Washington, D.C.

During her first trip to the nation’s capital, Kaylah spent time with Rep. Vern Buchanan, staffers for Sens. Mel Martinez and Bill Nelson and even President Barack Obama to lobby for a cause that could save her life.

Kaylah, diagnosed with Type 1 diabetes, joined more than 150 children from throughout the United States and other countries for this year’s Juvenile Diabetes Research Foundation Children’s Congress June 22-24. In addition to meeting with high-ranking government officials, the trip included town hall-style panel with celebrities living with diabetes (including Nick Jonas of The Jonas Brothers, Mary Tyler Moore and Sugar Ray Leonard), tours of historic monuments and even testimony at a Senate hearing.

The purpose of the Children’s Congress is to place faces of those suffering from diabetes in front of lawmakers to garner support for research funding. More than 1,500 children applied for this year’s Children’s Congress. Kaylah, one of seven selected from Florida, attended with her grandmother, Diane Chancey, and mother, Andrea Gunst.

“It was a once-in-a-lifetime opportunity,” Chancey said. “The neatest thing was to see all the kids interacting with each other. They had never met before, but because they had the same disease, it was like they knew each other already.”

Chancey remembers every detail about the day her granddaughter was diagnosed. It was Aug. 24, 2005, and Kaylah was only 2. In the weeks before, Chancey noticed Kaylah had lost weight. She also was urinating too much and was thirsty constantly. Finally, when her breathing became labored, the family took her to Manatee Memorial Hospital’s Emergency Room.

“She wasn’t talking, and her eyes were just kind of staring off,” Chancey said. “It wasn’t like her at all.”
Manatee Memorial then transferred Kaylah to All Children’s Hospital in St. Petersburg. That was where their lives changed forever.

“We were trained — this is your life now,” Chancey said. “They gave us oranges and taught us how to do injections.”

Type 1 diabetes patients are unable to produce insulin, which enables the body to turn glucose into energy. Sudden spikes or drops in blood sugar levels and cause life-threatening seizures at any time — and without warning.

Kaylah takes two to three insulin shots per day and endures as many as eight finger pokes to check blood sugar levels.

“We’re always chasing highs and lows — it’s constant,” Chancey said. “There’s no logic, no rhyme or reason.”

Kaylah and her family are active in JDRF’s Florida Suncoast Chapter. Their work there, coupled with Kaylah’s own account of living with diabetes, earned her the nomination to attend this year’s Children’s Congress.

Kaylah said she enjoyed touring the Lincoln Memorial and meeting Obama, Sugar Ray Leonard and, of course, Nick Jonas. She came back with several souvenirs, including autographs from celebrities and a special coin from Buchanan.

“(This trip) is something we’ll remember forever,” Chancey said.

Contact Michael Eng at meng@yourobserver.com.

JDRF Florida Suncoast Chapter
ADDRESS: 7341 Professional Parkway E., Lakewood Ranch
PHONE: 907-0811 or (239) 992-3840
E-MAIL: floridasuncoast@jdrf.org
WEB: www.jdrf.org/chapters/FL/Sarasota-Manatee

• SHARE
• Email This Page
• Share on Facebook
• Share on Twitter
• Share on Google Bookmarks