Dancing Through Life Despite Diagnosis

The day after Kelli Guillory was born, she stopped breathing twice. The code blues were terrifying experiences for her mother, Jennifer Guillory. But the medical professionals weren’t sure why baby Kelli was having trouble.

It wasn’t until Kelli was out of intensive care and following up with their pediatrician that Jennifer finally heard of very-long-chain acyl-CoA dehydrogenase deficiency (VLCAD, pronounced V-L cad), the condition with which Kelli, who turns 11 this month, is living.

Because of the rare genetically inherited disease, Kelli’s body is unable to break down certain fats. “For us, our food sticks to us and turns to energy,” Jennifer says. “For her, it doesn’t. It burns right through her.” So Kelli must stick to a strict high carb diet with less than 20 percent of fats per day. A fourth grader at Parkview Elementary, she has extra snacks built into her days at school, and any time she’s more active, she must also eat more.

For any type of vomiting or diarrhea, both typical childhood illnesses, Kelli has to go to the hospital and emergency protocol must be followed. “If they don’t, it can leave her with brain damage or kill her,” Jennifer says. “She’s been hospitalized 71 times.”

It has only been a year since Kelli has been in the hospital, making it only the second time in her life that she has gone that long without an admission to the hospital. “Sometimes when I was little, I used to call the hospital my second home because I had been there so many times,” Kelli says.

Kelli also has hemolytic anemia; her red blood cells are destroyed faster than they can be made. But the exact cause of that problem is unknown. “Everything they’ve tested her for (at St. Jude Children’s Research Hospital), it’s come back negative,” Jennifer explains. “She has been my fighter since birth.”

Because of the frequent hospital visits, Kelli has had a port implanted since her first year of life. It makes IV medication much easier to administer, and it must be flushed monthly. Kelli is a pro at managing those parts of her care. 

“She could check her blood sugar at three years old by herself,” Jennifer says. “In the hospital, she would help the nurses flush her ports.”

Kelli leads a full life while managing VLCAD. She’s active in her Girl Scout troop and part of the Healing Place Church kids program. Kelli loves dancing and singing and says her top favorite thing is crafting. She has two younger brothers, David and Gary. 

Giving back is a passion for Kelli, and she’s involved in raising money for the new Our Lady of the Lake Children’s Hospital through an annual dance marathon at LSU and a toy drive for children in the hospital during the holidays. She participates in radiothons for Dreams Come True, a local nonprofit that grants wishes for Louisiana children facing life-threatening diseases. Kelli was able to go to Disney World when she was six thanks to the program. 

“Sometimes I don’t like having VLCAD, and sometimes I’m frustrated about it,” Kelli says. “Sometimes it aggravates me taking so much medicine.”  Kelli has two penpals who also have VLCAD, and being connected with others who understand helps.

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02 Jan 2020

By Mari Walker

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