supporting pediatric diabetes research at uf

For Kelly Guillou and her daughter, Clementine, this fundraiser means a lot to their family.

When Clementine was born March 2010, it was discovered that she had a genetic condition called Prader-Willi Syndrome. It was a shocking diagnosis, and one that carried with it many medical and developmental challenges. Luckily, one of the world’s leading specialists in this syndrome, Jennifer Miller, M.D., a UF College of Medicine pediatric endocrinologist, happened to be at the University of Florida. The Guillous immediately made an appointment to see her and joined her practice.

Fast forward 18 months. Although the Guillous were having their struggles, things were going well and Clementine was healthy.

“Suddenly we began to notice some unusual changes,” Guillou said. “Clem began to exhibit abnormal thirst, and she started to lose weight. Clem was also very listless. I recognized the signs as those of diabetes. So off we went to the pediatrician. When I relayed my suspicions to him, he was doubtful, but agreed to test her blood sugar levels.”

The next thing Kelly Guillou knew, they were in an ambulance headed to Children’s Healthcare of Atlanta. There, Clementine was officially diagnosed with type 1 diabetes.

“It was an incredible kick to the gut,” Guillou said. “I couldn’t believe that she would have to suffer this disease on top of everything else she would face.”

For the next year and a half, the Guillous visited a few pediatric endocrinologists but couldn’t seem to find one they really liked. Kelly wanted Clementine to have the best diabetes care possible and to be followed by a physician who had his or her hands in leading type 1 diabetes research.

“I started to research T1D specialists,” Guillou said. “Then, it occurred to me to ask Clem’s PWS doctor who she would see if her child had T1D. Without hesitation, Dr. Miller told me she would see Dr. Des Schatz. Dr. Miller arranged our first appointment with Dr. Schatz when Clem was 3 years old.”

At their initial meeting, Des Schatz, M.D., the UF Health Shands Children’s Hospital’s interim physician-in-chief and interim chair of the UF College of Medicine’s department of pediatrics, explained that diabetes was a very complicated and burdensome disease, but one that Clementine and her family could manage and control. They would need to follow Schatz’s instructions and lead a healthy lifestyle both in diet and in physical activity.

Within a few months, Clementine was using an insulin pump ( something previous doctors had said wasn’t recommended because of her age) and her A1C had fallen into line.

“When Clem was 7, we were able to take advantage of cutting-edge technology and begin using an ‘artificial pancreas’ closed-loop system that has further improved her blood sugar control,” Guillou said.

“Clementine and I have been very fortunate in our ability to secure such expert diabetes care. But even though her T1D is currently under control, there is still no cure. The burden of diabetes management is heavy and financially draining. The consequences of uncontrolled or poorly managed diabetes are dire. I worry about what will happen to Clem’s health if I’m not able to help her manage it. That responsibility will be passed along to her siblings, and that makes me very sad.”

Supporting diabetes research at UF

Moving the T1D research needle

"What we need, what we MUST have, is research that will help fully explain the mechanics of T1D. "With a full understanding will come solutions. Solutions will improve diabetes technology and will hopefully lead to a cure. This is why we are raising money for the Diabetes Research in Pediatrics Fund at the UF Diabetes Institute. Please help us in our efforts to move the needle on T1D research and help find a cure for my daughter and all others living with T1D."