The 5-year-old from Springboro was nursing a cold that day in March, so I handed her a tissue. Despite having the sniffles, Avery was a good girl while the grown-ups talked.
But her mom, Hallie, was mortified when Avery put her feet on the couch. Avery scooted over to get a better view of photos I had displayed of my daughter’s two young sons.
“Don’t worry about it,” I said. “I’ve got grandchildren. And you’re a taxpayer. You paid for that couch. It’s yours!”
Our conversation was light, but the purpose was serious. Avery has juvenile diabetes, and the illness doesn’t go away in a couple of weeks like a cold. Her family had traveled from their Warren County home to the nation’s capital to ask for help in finding a cure.
I found Avery to be a remarkably sweet girl – with light brown curls, bright blue eyes, and a dazzling smile. It’s a combination that could melt your heart.
And yet, this pretty little girl has an ugly disease.
Juvenile diabetes, also called Type 1, strikes suddenly. It can lead to kidney failure, seizures, blindness, amputations, and death.
There’s a misconception that Type 1 diabetes can be caused by poor diet or a lack of exercise (Avery stays busy with gymnastics and cheerleading). It’s actually a disorder of the body’s immune system.
Avery will not outgrow it, and she must take insulin to stay alive.
At the moment, the best medical minds in our country are trying to develop a device to make managing the disease a little easier for Avery and her family.
I wish it was a cure, but it’s not. At best, it’s a work-around, a gadget – two gadgets, really. One would monitor Avery’s blood-sugar levels, and another would calculate and automatically dispense the correct dose of her required insulin. The device, dubbed an “artificial pancreas,” is being tested now. Volunteer test subjects will wear it.
Avery, a pupil at the Walter Shade Early Childhood Center in West Carrollton, is not alone in this battle. Nearly 26 million people in America have diabetes, and one out of every three babies born in this country will develop the disease.
This is costly. Medicare spends a third of its payments on diabetes, and the overall drain on the U.S. economy is $174 billion annually for medical care and lost productivity.
Avery and her mom visited Washington to ask me to sign a letter to the commissioner of the U.S. Food and Drug Administration, urging the agency to move in a timely way to approve the artificial pancreas for use in managing diabetes. I gladly did so, along with some of my colleagues in the House.
We sent the letter in April. Last month, the FDA issued what’s called draft guidance to help manufacturers as they try to develop and seek approval for artificial pancreas devices to treat diabetes. It’s a step in the right direction.
This week, Avery visited me again. She had a smile on her face when she and her mom stopped by my Cincinnati office. They thanked me for signing the letter to the FDA and for having co-sponsored legislation in the House to fund research on how to find a cure for diabetes.
Avery was accompanied by three other children, who lead active lives despite having diabetes: Nora Loving, 11, of Batavia, a fifth-grader at Immaculate Heart of Mary in Anderson Township; Sam Spears, 11, of Madeira, a fifth-grader at St. Gertrude; and Finn Roach, 15, of Deerfield Township, a freshman at Mason High School.
There were a few teary eyes among the dozen adults in the room when talk turned to the physical, emotional, and financial toll diabetes can inflict on families.
But I wish you could have seen the smiles and heard the laughter of these children – and parents – as the talk turned to things such as gymnastics, running cross country, playing football, and wrestling.
Despite all the effort and money put into battling diabetes, the disease isn’t retreating. We still don’t know exactly what causes it. We don’t know how to make it go away.
But because of kids like Avery, Nora, Sam, and Finn, I will not give up the fight.
Jean Schmidt is the U.S. Congresswoman serving Ohio’s Second District.