Five-year-old Grant Leonard has enough on his plate with his type 1 diabetes, but this summer he’s also advocating for more research dollars to fight the disease.
The Gilbert youngster — an incoming kinderartner at Colina Elementary in Ahwatukee — will join over 160 other children from across the country July 8-10 at the nation’s Capitol for the JDRF 2019 Children’s Congress.
JDRF is an advocacy nonprofit that funds type 1 diabetes research and was formerly known as the Juvenile Diabetes Research Foundation.
“He is such a strong little boy and we are so proud of him,” said mom Faith Leonard. “We see real strength every day.”
Grant has a one-on-one meeting with Arizona’s lawmakers, U.S. Sens. Kyrsten Sinema and Martha McSally and U.S. Rep. Andy Biggs, who represents District 5, which includes Gilbert and most of the East Valley, according to Leonard.
He also may have a chance to share his personal testimony at a congressional committee hearing on the last day, she added.
The boy’s journey with the disease began more than three years ago with a few tell-tale signs.
Leonard remembered finding her son’s crib soaked, sopping wet with urine every morning. True, he was still going through potty-training but “this is crazy,” Leonard thought as she decided to move him up to the next diaper size.
And the couple’s only child was always thirsty.
“It’s tricky here in Arizona,” Leonard said. “We push water so much and he’s always been good at drinking water.”
But one day on a short walk back to the house from a park, Grant was lagging. He was tuckered out, wasn’t super talkative and was going slower, Leonard said.
The former teacher called the pediatrician and told her Grant’s symptoms.
“I remember it was a Friday afternoon,” Leonard said. “She said get him in now.”
Leonard, however, wanted to wait a week when her husband Dave, then a teacher at Kyrene de las Lomas Elementary School, was on spring break.
Dave will begin teaching this fall at Kyrene Centennial Middle School, which is next door to Colina.
“If I had waited until the next week, he would have probably passed away,” Leonard said.
Grant was diagnosed with type 1 diabetes days before his second birthday. Normal blood sugar levels are 80 to 120, Grant’s level was over 770, his mom said.
Grant is one of about 200,000 youth in the United States with the disease where the pancreas can’t make the insulin to regulate sugar in the blood.
Left untreated, people risk diabetic ketoacidosis or DKA, a life-threatening condition that leads to diabetic coma and death.
There is no cure and people need insulin to survive. Type 1 can be diagnosed at any age with more than 1 million U.S. adults living with the disease.
The American Diabetes Association estimated 40,000 people will be newly diagnosed each year in the United States.
And, between 2001 and 2009, there was a 21 percent increase in the prevalence of type 1 diabetes among people younger than 20, according to JDRF.
“I have a broken pancreas and fingertips of steel,” Grant said in reference to his fingers being pricked to test his blood. “The hard part about type 1 diabetes is trying to be strong every day.”
Grant said he doesn’t let the disease keep him from doing things he loves — playing soccer, basketball, swimming, reading a good book or playing with his friends.
Grant said he’s not known for turning down a doughnut and one day he hopes to become a firefighter to help people because he is “very brave.”
Leonard said Grant’s diagnosis came out of the blue because no one in her or her husband’s family has the disease. Her father does have type 2 diabetes, which is more common and can be controlled through diet and exercise.
“It was obviously very challenging,” Leonard said. “This was a complete adjustment in our lives, the shots, the pokes and measuring everything. But I think, as with anything, aspects definitely get easier.”
For example, Grant has to take insulin every time he eats. He used to have shots but he now wears a computerized insulin pump.
“He’s been healthy and strong, which has allowed him to keep as much normalcy as possible,” she said.
Leonard said her son is handling the disease like a trooper but social awareness is beginning to weigh on him. For instance, he’s begun to notice his peers in pre-school and on his sports team don’t have diabetes.
“It’s hard,” she said. “He’s starting asking when his type 1 diabetes will go away. It’s heartbreaking. There’s no cure but we keep doing what we are doing.”
Because Grant’s pump is visible, he gets questioned frequently, which he uses as an opportunity to educate people about the disease.
“This morning at Vacation Bible School, one of the kids in the group asked, what is that,” Leonard said. “‘It’s my insulin pump,’ (he said). He knows if he doesn’t get the insulin, he’s not going to be alive.”
Leonard recognized Grant is able to access care and devices because of their health insurance but she worried about other families not afford the same opportunity and when her son is older and is on his own.
Most stories about people rationing their insulin are among those 20-30 years old, Leonard said. That’s the age group where young people fall off their parents’ insurance and either have no insurance or inadequate policies, she added.
“These guys have to pay upwards of $1,000 for insulin and can’t afford it,” she said. “You hear about rationing or hear about people using other people’s insulin.”
In the last 20 years the cost of insulin has shot up 200 percent, according to Leonard.
“It costs us upwards of like $500 to $600 a month for medical supplies and insulin,” said Leonard, who is now an event planner. “It’s very expensive even with the support of insurance. It’s not like it’s medicine that (Grant) needs to make him better but it’s something he needs to keep him alive.”
She said it is important to bring awareness of the disease to Congress members to ensure there is funding to eventually find a cure.
“More and more kids are getting diagnosed every day,” she said. “It’s about quality of life, allowing children to live independent, happy, healthy and normal lives and still do things that they are able to do.
“My goal as his mom is to bring as much advocacy and awareness and hopefully make grains so by the time he is a 25-year-old man, he is never in a situation where he’ll even feel tempted to ration.”