Joshua Davis at the State of the Union.Photo: Evelyn Hockstein-Pool/Getty
While his seventh-grade classmates watched President Joe Biden’s State of the Union address from home on Tuesday night or skipped it entirely, 13-year-old Joshua Davis found himself seated next to First Lady Dr. Jill Biden as the president honored him for his years of advocacy for diabetes research and lowering drug prices — and wished him a happy birthday.
“That was very, very unexpected,” Davis, from Midlothian, Virginia, tells PEOPLE. “And also awesome.”
Sitting in prime seats at the U.S. Capitol was a huge moment for the middle schooler, who, along with his parents Shannon and Brian Davis, have dedicated themselves to raising awareness for diabetes sufferers — and a moment that almost didn’t happen, after Joshua nearly died due tohis type 1 diabetesat just 11 months old.
Joshua had managed to climb out of his crib and fall, and a concerned Brian monitored him closely for any signs of a concussion. The next morning, Joshua had thrown up and Brian rushed him over to the hospital, where doctors found that he was extremely dehydrated.
Joshua Davis in the hospital at 11 months.Shannon Davis
But after checking Joshua over multiple times, the doctors couldn’t figure out the cause. They were about to send the family home, when another doctor came in just to “see the cute little blond” she had heard about.
“She came in and walked over to him, and I could see her demeanor change a little bit, because she leaned in closer and inhaled through her nose,” Brian says. “One of the signs of ketoacidosis, or really high blood sugar, is a fruity smell to the breath.”
That tipped her off that Joshuacould be diabetic, and a blood sugar check confirmed that his levels were extremely high.
“At that point the room just kind of blew up,” Brian says. “There was a flurry of energy and people in and out and they got him transferred to pediatric intensive care. We later found out that he was in full system shutdown and probably within hours of passing away, had they not caught it.”
Joshua Davis at the hospital at 11 months old.Shannon Davis
The next few days, weeks and years were lessons in taking care of a young child with type 1 diabetes. Though Brian alsohas type 1 diabetes, he says trying to regulate the blood sugar of an active, growing toddler was an entirely different world.
The first step, Shannon, 43, says, was “to grieve the loss of normalcy.”
“You have an idea in your head of what life is going to look like and what it’s going to be and how things are going to go. And when you have a child diagnosed with a life-threatening disease — no matter what that disease is — you have to grieve the easy part of the life that you expected before you can really embrace the beautifulness of the new situation.”
Meanwhile, the Davis' were learning how to give Joshua regular shots of insulin and exactly how much, which could differ based on factors as small as how many Goldfish crackers he ate after running around the playground.
“It was a nightmare that we were able to get to the other side of with the support of our doctors and their staff and online communities of other parents that had been through it,” Shannon says.
Joshua Davis trialing the Artificial Pancreas System at UVA.Shannon Davis
They also became a family thathas to pay for insulinfor not one, but two people.
“We spend thousands of dollars a year on insulin,” Shannon says. “We are not a family, thankfully, in a position that we have to choose between our insulin or our house. But we have had to learn tricks along the way. Insulin, once it’s opened, expires after 30 days, so Brian and Joshua will share a vial so that we don’t waste any. Sometimes we’ll use it a few days past expiration or we won’t buy it in January, when we have to hit our high insurance deductible, because we don’t have the funds to buy it that month.”
While they can generally afford the insulin, “there are families who are uninsured or underinsured who literally cannot,” Shannon says, and that’s part of why they got involved with diabetes advocacy.
Joshua Davis and Brian Davis with their insulin pumps.Shannon Davis
“The bottom line is that it should never be a choice for a family to have to choose between insulin and their electricity,” she says. “If you look at the history of insulin and how it was given away for a dollar, it’s heartbreaking to know that there are families that can’t afford it when the price is inflated to $300 a vial.”
With Joshua now 13 years old, he’s able to manage his insulin himself. He also now has years of advocacy under his belt ever since the family — Shannon, Brian and their older son Jackson, 16 — joined JDRF (a type 1 diabetes advocacy group) and started actively working with Virginia state legislators to push for better research and visibility when Joshua was 4 years old.
(L-R) Virginia Rep. Abigail Spanberger, Brian Davis, Joshua Davis, Jackson Davis and Shannon Davis.Office of U.S. Rep. Abigail Spanberger
One of the Davis' current goals is to get legislators topass caps on the price of insulin, which Biden recognized on Tuesday.
“It does affect us, but I know that somewhere out there, there are families that have it much worse than we do,” Joshua says. “And I’m advocating because I know that if we can get the insulin co-pay capped at $35, then it’ll be life-changing for them.”
“My hope is that as a family, we can help push down the price of insulin, and then it’ll help to normalize prescription drug pricing for the country,” Shannon says.
source: people.com
