Nine-year-old Ava Perkins has never known a life without type one diabetes, nor has she known a life without an outpouring of love and support from her family, friends and “dia-buddies.”
“I have some diabetes friends, and we call them ‘dia-buddies,’” Ava says.
What began as a search for such “dia-buddies” turned into the beginning of a group designed to bring together local diabetic children as a way showing them that they are not alone in their journey.
The idea for Sweet Heroes, an organization dedicated to holding social events for type one and type two diabetic children ages 17 and under in Terrebonne and Lafourche Parishes, began circulating in the mind of Ava’s mother Laurie Perkins back in March of this year.
Being the only child at her school with diabetes, Ava did not have any local friends who shared her condition.
Laurie’s mother told her of a friend close to Ava’s age whose young grandson Eli has diabetes. When the families attended a walk together, Eli’s family told Laurie of the many events that their small hometown offered for children with diabetes.
Upset over the lack of local events for diabetic children, Laurie decided to start her own group.
Sweet Heroes’ first meet-and-greet took place on Aug. 24 at Da Swamp in Houma, with six children in attendance.
Ava says she was excited but nervous for the organization’s first event.
“I was nervous because I knew a bunch of people would be shy, and I told them that everyone’s here. You can talk [about] what’s going on and diabetes, and also there’s snacks upstairs,” Ava says.
Ava was born with a rare disease known as hyperinsulinism, which the National Organization for Rare Disorders (NORD) defines as “the most frequent cause of severe, persistent hypoglycemia in newborn babies, infants, and children.”
At 33 weeks of her pregnancy with Ava, Laurie noticed that her legs and feet were swollen. She was admitted into the hospital due to high blood pressure, where she found out that she had pre-eclampsia and would have to deliver Ava prematurely.
Because of her condition and the fact that Ava was born prematurely, the doctors checked Ava’s blood sugar in her first hour of life, which registered at 14–a fatally low number.
Laurie says learning of her daughter’s hyperinsulinism diagnosis was “surreal.”
“Everything just happened so quick that I’m just more of a realistic person. I’m like ok, tell me what’s going on. Give me all the facts. Give me all the options. Let’s get a game plan,” Laurie says.
When medication failed to show signs of curing Ava’s disease, she had 98 percent of her pancreas removed at one month old. With most of her pancreas gone, Ava would be a type one diabetic for the rest of her life.
Laurie said Ava has always been in tune with how she is feeling and what is going on with her body. By the time Ava was five, she was able to check her own blood sugar.
Ava wears an insulin pump called an OmniPod on her arm that delivers her insulin through the use of a handheld Personal Diabetes Manager (PDM), as well as a continuous glucose monitor (CGM) that keeps track of her blood sugar levels. Ava also keeps a bag with her at all times that contains glucose tablets and an emergency glucose shot.
For Ava, the most challenging parts of living with her condition have been the questions that she receives and the changing of needles on her equipment.
Laurie says she tried to teach her daughter to educate those who ask her questions, explaining to them that she needs her devices to keep herself alive. Sometimes Ava will explain her condition if she feels like it, but if she does not feel up to doing so, she said she will tell them to “Google it.”
“Little kids ask a bunch of questions. ‘What’s that?’ ‘What’s this?’” Ava says. “It’s really hard to explain because it’s a whole lot of details, and I’m like, ‘Well, I have diabetes, and if you want to know what it is, search it or ask your parents.’”
The key to navigating a life with diabetes is open communication and trust between Ava and her parents.
Ava sticks to a regular daily routine in order to ensure she is properly taking care of herself. Before she eats any meal, she and her mother check her blood sugar through an app on Ava’s phone that works in conjunction with her CGM. If her blood sugar is high, they stick to low-carb foods. If it is low, Ava can have more sugary foods.
Her blood sugar levels also determine how much insulin Laurie will give her.
“Every day, every meal is different,” Laurie says.
Living with a condition like diabetes, it was beneficial for Ava to find friends with whom she could relate and speak about her condition.
Ava said her friend Eli is her inspiration. It was Eli’s CGM machine that inspired the Perkins family to get Ava a CGM of her own.
In addition, Ava and Eli act as pen pals.
“We always talked about like where we put our CGMs and stuff at, and just when I talk to other diabetics, I can know that I can count on them, and they know what it’s like,” Ava said.
Laurie knew she needed to create Sweet Heroes for children like Ava to find people who understand what it is like to live with diabetes. She said it can be overwhelming for families of newly diagnosed children.
“I just wanted them to know that it’s going to be ok. Like there’s enough medicine out there. There’s enough tools out there. There’s enough education out there. There’s enough support out there,” Laurie says.
She wants other parents of children dealing with special needs to know they are not alone.
“Love them hard. Love them long…It’s ok if you break. It’s going to be ok. Love them no matter what. Support them in any way possible. If you need help, it’s ok to ask. You are your child’s advocate,” Laurie says.
Laurie always tells her daughter that she can do anything that anyone else can do, and the sky is the limit. In her free time, Ava enjoys gymnastics, basketball and playing outside or playing with her toy horses.
Laurie said her daughter is her hero.
“She literally is the strongest, bravest person that I know, and the craziest part is like, she doesn’t even see it. She just does it,” Laurie says.
Ava has her own advice for children who share her condition.
“Believe in God because God has a plan for you, and…you can just count on your friends and family,” Ava says.