It was three years ago, and Alex Amaral had just been diagnosed with type 1 diabetes at 7 years old.
His parents were distraught, unsure of the next steps they would have to take. They were crying on his hospital bed, when suddenly Alex stood up and showed his strength in the moment.
“The first night we stayed there, we’re crying our eyes out [and] we’re trying to be strong for him, and he stands on the bed and he goes, ‘Stop crying. We’ll do this.’ Ever since that point, that’s kind of been his attitude,” his father, John Amaral, said during an interview at Beacon Communications offices on Nov. 26. “He does his thing. You don’t know he even has it. It’s awesome.”
The American Diabetes Association states in a fact sheet called “The Burden of Diabetes in Rhode Island” that the disease is an “epidemic” in the Ocean State, afflicting about 11.5 percent of the adult population alone. The ADA estimates that of the 106,210 people in Rhode Island who have diabetes, about 27,000 don’t know it.
The ADA noted that those with diabetes incur medical expenses 2.3 times higher than those without it.
“You think they’d look up to you, but we kind of do because at that age I wouldn't be taking injections, and it’s amazing,” John said. “I give him credit. He does his school, if he gets low, he does his thing. He does sports, it doesn’t faze him. He doesn't use it as a crutch. He goes on his way. He has that mentality, and it drives my wife and I to go to the State House and get involved with [Juvenile Diabetes Research Foundation], and it’s just a way of life now. Things could be worse.”
Alex is now 10 years old and functioning at a high level. He plays baseball and basketball, and he and his parents are easily able to track his blood sugar levels through a device affixed to his back hip. His readout is displayed through an app that both Alex and his parents are able to check, a much easier process than pricking his fingers several times a day.
It’s allowed Alex more freedom, as he estimates he checks his levels on the device about 30 times a day.
“I can look at my phone and know he’s in range, or if he’s getting high or low we can treat it accordingly,” John Amaral said. “For us, it was a life change as far as understanding, how do you do deal with that? When he’s at parties, and when you go out at a restaurant, you go to Chili’s and he wants a hamburger. You’re trying calculate all the carbs to understand what impact it’s going to have and to get the math and figure out what the ratio is.”
The past three years have seen the Amaral family link itself up with the Juvenile Diabetes Research Foundation, or JDRF. John said they became involved in JDRF’s annual One Walk – which the company’s website calls its biggest annual event – two years ago, when he spearheaded a top-10 fundraising team. He and his wife became more involved, joining the One Walk committee and attending galas.
Now, they’re thinking bigger. The Amaral team was in the top five for fundraising, with the walk being held in Johnston. The continued success led John to wonder how JDRF can became more involved in Rhode Island, which led to a twofold approach. The first was working with his neighbor, Dist. 25 Sen. Frank Lombardo III, to facilitate a meeting with Gov. Gina Raimondo.
That mission came to fruition in the middle of November, when Alex and John were part of a crew that visited Raimondo at the State House. John said Raimondo was very supportive of their efforts, and she asked what the state could do to help.
He said she also signed a proclamation recognizing World Diabetes Day in Rhode Island, and the State House was lit up blue for a week for type 1 diabetes.
“It was pretty cool,” Alex said concisely.
“She met with us and she spent time with him and my daughter, Mia, she’s 6, and she’s Alex’s biggest cheerleader and she was there and the Governor was with her,” John said. “It was neat, just seeing that support and she’s like, ‘What did you need from the state? What can Rhode Island do?’”
Amaral told Raimondo he would like to have a formal meeting about ways to involve JDRF more in the Ocean State, as the organization only has a larger New England chapter.
“She was very accepting about that, so hopefully later on, down the line, maybe we can meet again and do something,” John said. “That was the first step, hopefully that’s the jumping-off point for something bigger in the state.”
The other prong to the Amarals’ approach is potentially bringing that Rhode Island chapter into existence, though John noted that is a substantial undertaking.
“That’s something that has to go through JDRF and you have to put facts and figures and show a steady stream of income,” John said. “That’s blue sky.”
For now, though, the Amarals want to keep shedding light on type 1 diabetes, and Alex is right there as a symbol of strength and how to live with the condition.
“You don’t hear anything about it, and there’s someone else in his school that has it,” John said. “There’s two or three other kids [at Brown Avenue] over the past couple of years that have it. The more and more you get out there and talk to people, it’s prevalent. It’s how do we do our part of bringing that awareness.”