Just three months after Douglas and Ailyn Hemminger of Tampa, Florida, brought their infant son, Evan, home from the hospital, he began demanding breast milk constantly. At first they thought it was just a growth spurt, but after an especially difficult night, they decided to visit their pediatrician, Dr. Hoyos. The doctor immediately recognized the classic symptoms of type 1 diabetes in Evan – dry skin, extreme hunger, and very wet diapers. Dr. Hoyos had Evan's blood sugar checked, and it was over 800. The Hemmingers were sent to the hospital immediately. It was March 3, 2008.

Amazingly, even as Evan was being diagnosed with type 1 diabetes at the hospital, the pediatric endocrinologist there also mentioned the very slim possibility of monogenic diabetes. She had never seen or heard of a case as young as Evan, but she told Ailyn there was a slight chance. She sent a sample of Evan's DNA to be tested for monogenic diabetes that very day.

The Hemmingers were hopeful but also overwhelmed with the diagnosis of type 1, so they dove into researching the disease through the internet and books. Right away, they had great difficulty in finding any information specifically for parents of infants with type 1 diabetes. Every day was a horrible rollercoaster filled with constant blood sugar tests and totally unpredictable results.

"Diabetes ruled our life," Ailyn remembers. "With infants, it's a different ballgame. You don't know if they're crying because they're just a baby, or if they're low or high. Evan's sugars could go from 200 to 43 in an hour with no explanation."

Meanwhile, a mix-up at the lab meant the Hemmingers had to send another DNA sample and wait another couple weeks for the results. Ailyn and Douglas did the best they could to adjust in those two months. Ailyn says the best advice they received was to "be a parent, not a pancreas" - in other words, realize they could never be perfect in controlling his blood sugars and just do what they knew to do as parents.

Then on May 27, the Hemmingers' hope was renewed. They received word that Evan had tested positive for the genetic mutation that causes monogenic diabetes. They were beyond thrilled, and again turned to the internet to find as much information as they could on monogenic diabetes. Their local hospital wasn't prepared to treat Evan appropriately, so the Hemmingers decided to contact Dr. Philipson in Chicago, whom they had read about on JDRF's monogenic diabetes site.

"He was wonderful," says Ailyn. "He explained everything and graciously said we were welcome to come to Chicago because they had experience treating infants. We immediately decided that was what we would do."

On July 20, 2008, the Hemmingers flew into Chicago. The following day they met Drs. Philipson and Greeley face to face. The doctors explained the process they would use to wean Evan off insulin, cautioning that it could take anywhere from 1 to 6 days if it worked at all. They put him on gliburide at 7am that morning, and it instantly took effect.

"We gave Evan his last shot of insulin on July 21 at 6:00 am, right before we checked in," Ailyn shares. "He never needed insulin again, and never had any extreme high or low blood sugars again. I can't even begin to describe what a blessing it is. Now he takes half a pill in the morning, another half at lunch, and ¾ of a pill at bedtime. That's it."

Now 10 months old, Evan is happier than ever. He hadn't had any developmental delays due to his diabetes, but his parents still noticed an immediate difference with the new diagnosis and treatment. Today they describe him as stress free and able to sleep through the night. They recently were able to leave him overnight with his grandparents for the first time.

The Hemmingers still check in periodically with Dr. Philipson to let him know how Evan is doing, but they also have a pediatric endocrinologist in Florida, who is learning a lot through Evan. He is her first patient with monogenic diabetes, and one of the youngest worldwide.

His parents hope that others can learn from their experiences as well. "When we first got diagnosed we looked for anything that might help parents of infants with diabetes, any information or story that might relate to managing an infant (not a child with diabetes) but we did not find much at all," Ailyn explains. "We would like to change that even a little with our story. We want people to know that if they have an infant with type 1 or monogenic diabetes, they can do it; we've been there."

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