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Taking part in research gives Florida family "safety net"
Adam and Dani Bello of Jupiter, FL, learned about TrialNet screening at the annual Children With Diabetes conference in Orlando in 2007. That was the year their son Max was diagnosed with type 1 diabetes at age 5.
“I was screened right away,” says Dani. “I wanted to help with the research. When you have a child diagnosed with the disease, you feel like you don’t have a lot of control. You want to do something to help. I didn’t have my children tested at that time. Max had been diagnosed a couple months earlier, and I couldn’t have taken another diagnosis then.”
Husband Adam is the one who pushed to have their other children screened. “I’m a physician, and I look at things from more of a clinical perspective. It’s scary to find out your child has a high risk of type 1 diabetes, especially when you have another child with the disease,” says Adam. “But not knowing is not going to help you or your children.”
A year later, the Bellos took their two other sons to be screened. That’s when they learned that their then five-year-old son, Grant, tested positive for antibodies that signal an increased risk for type 1 diabetes. “We very quickly transitioned from being upset to deciding to do whatever it took,” says Adam. “We met with Dr. Schatz and the TrialNet staff at the University of Florida. They told us about the Oral Insulin Study. They helped make the decision easy.”
Grant, now age nine, has participated in the Oral Insulin Study for four years. He’s helping to test whether a capsule of oral insulin each day can help delay the onset of type 1 diabetes. Earlier studies suggest it might help delay the disease up to 10 years in individuals with high levels of antibodies.
Adam says, “Grant is still healthy. He takes his pill every morning. He’s getting older, and blood draws are easier. He understands what he’s doing. And, if he develops type 1 diabetes, we’ll know at the earliest possible time. No surprises, no DKA (diabetic ketoacidosis), no ER, no ICU.”
Dani says enrolling their son in the Oral Insulin Prevention Study provides them with a safety net. “We know we are doing everything we can to delay onset of this disease. Anyone with a child with type 1 diabetes knows every day you can delay it is a gift.”
“We all go to University of Florida every 6 months. Our other children are in the Pathway to Prevention Study, so everyone gets tested. We make a trip out of it,” explains Adam. “It gives us a measure of empowerment over a disease where you have little control.”