ONTARIO — Before Addie Johnson’s diagnosis, her parents said they never imagined their family would one day manage insulin pumps, medical devices and constant blood sugar checks.
“When you’re rocking your baby to sleep you never think about this stuff,” Mikayla Johnson said. “You never think ‘Oh, in five years I’m going to be giving her shots and putting devices on her body.’”
Addie’s diagnosis came after early symptoms similar to the stomach flu. Mikayla noted signs of Type 1 diabetes (T1D) can vary, including mood changes, excessive thirst and other warning signs not initially pointing to diabetes.
Doctors later confirmed T1D after testing ketones, which led to an immediate hospital transfer.
“They told me Addie had sugar in her test and asked if I had a way to get to Akron Children’s emergency room,” Mikayla said. “We were in denial thinking maybe they didn’t wipe her finger well enough.”
At the hospital, the family received the official diagnosis, a moment Mikayla described as life-altering.
She said they quickly learned about insulin management, ketones and diabetic ketoacidosis.
Kyle Johnson explained Type 1 diabetes is an autoimmune disease in which the body attacks the insulin-producing cells in the pancreas. Unlike Type 2 diabetes, people with T1D cannot naturally produce the insulin their bodies need.
“I was nervous and confused, I just didn’t know what it was,” 9-year-old Addie said when asked how she felt after receiving the diagnosis of T1D.
“For Addie, she physically doesn’t have that mechanism to lower everything. That’s why she has to be on insulin,” Kyle said.
Turning awareness into action
After the diagnosis, the Johnsons learned how to live with it — and then decided to build something larger out of it known as Addie’s Helping Hand.
The family learned about Breakthrough T1D through the hospital and connected with its mission. The Johnsons quickly became involved in fundraising, generating about $2,000 in two weeks for a walk event.
Mikayla said Addie’s curiosity about helping others surfaced immediately. At the walk, Addie asked if they could do more, which led to ideas like making fanny packs for newly diagnosed children.
The fanny packs included pump stickers, dexcom stickers, insulin vials, crayon packs and bracelets from her boutique. Akron Children’s Hospital was able to distribute them to the next 80 children diagnosed with T1D.
“There are limited resources for Breakthrough T1D where we are,” Mikayla said. “It’s really important for kids to experience other children who have T1D and know it’s OK.”
She said support systems have made a major difference for them – but not everyone has the support they do.
“We just want to fill that gap and be that for someone,” she said.
Building a mission for the T1D community
The Johnson family became more involved with Breakthrough T1D after Addie was named an ambassador.
During a gala event, Addie met other children openly wearing insulin pumps and Dexcom devices — a moment Mikayla said transformed Addie’s confidence.
“She still didn’t want anyone to see her pumps or Dexcom,” Mikayla said. “But at that event, it was almost like a lightbulb moment.”
Inspired by the experience, the family launched Addie’s Helping Hand in November 2023, shortly after Addie’s diagnosis in September 2023. The non-profit organization initially raised money for Breakthrough T1D before expanding into local support efforts.
“We’ll still donate to research, but we want to keep a pretty good portion here in our community now that we have the 501(c)(3),” Kyle said.
Since starting the organization, they have raised nearly $25,000.
Kyle said the organization aims to support both individuals and families.
Addie’s Helping Hand sent supplies during Hurricane Helene to families in need of diabetes resources.
“Addie’s Helping Hand is not only for the diabetic, but for the entire family,” he said.
Addie has also participated in visits to research facilities such as Case Western, where she learned about ongoing studies related to diabetes treatment and prevention.
She creates bracelets, bead keychains and affirmation hair clips through her boutique, Diabeadie Boutique.
Addie said the mission feels personal and meaningful.
“It’s going to seem hard at first, you’re going to be discouraged but once you get into it you’re just going to get used to it,” Addie said. “It makes me feel really good deep down, knowing I’m helping so many people. “
It makes me feel happy, I honestly love doing it.”
Spaghetti dinners, fundraisers and a growing mission
The Johnson family built much of their fundraising around community events, notably the annual spaghetti dinner which first launched in August 2024.
The dinner helps the family partner with local schools, provide fanny packs to newly diagnosed children, offer supplies to families in need and continue supporting the local T1D community.
Mikayla said the dinner draws strong attendance and creates a casual, community-centered atmosphere similar to a social fundraiser or bingo-style event. The third annual spaghetti dinner will be Sept. 19.
As the organization has grown, the Johnsons continue to focus on local needs. Mikayla said they have seen a lack of education in schools and limited understanding of T1D.
She said misunderstandings about T1D are common, especially assumptions that sugar causes the disease or children with diabetes cannot eat sweets.
“People just don’t understand it until your kid is laying in that hospital bed,” she said.
Kyle said future plans include expanding school support systems, including better training for nurses and staff.
“We would like to go to the schools and talk to them and ask what we can do to help,” he said.
The family also hopes to create scholarships for individuals living with T1D and expand grant support for medication costs.
Kyle said the organization continues to focus on normalization and inclusion.
“Just because she has an electronic pancreas on her arm, she can still do everything that everybody else can do,” he said.
The Johnson family said they want Addie’s Helping Hand to fill the gaps they once struggled to navigate alone.
“If someone doesn’t have to search for it the way we did, then our mission is complete,” Mikayla said.
(Photos of Addie, previous spaghetti dinners and events. Provided by Mikayla Johnson)
