Neapolitan Family October cover girl model, Leah Shwedel. Photo credit: keri@kerijohnson.com
Leah Shwedel, 9, holds up four-gallon size freezer bags stuffed with small syringes. Then she tells everyone that is how many shots she has endured during the past three months. But the shots aren’t even the hardest part of having Type 1 diabetes. The tough part is the daily balance of food, insulin and lifestyle that is needed to keep the young Naples girl alive.
“Most people think I got it because I ate too much cake. I don’t even like cake,” Leah said.
On stage during charity events, Leah jokes about life with diabetes, but in reality, it never stops being very serious. The chronic disease essentially programs a person’s immune system to destroy cells in the pancreas that produce insulin which is vital for turning sugar into energy. Leah is one of about 1.9 million people living with Type 1 diabetes in the United States. And it’s a roller coaster of hospital visits, sleep-deprived nights and lifestyle modifications.
It all began one day when Leah was five years old. She had been a healthy child.
“And then bam, one day I wake up, and I am extra, extra thirsty,” Leah explained. “I drank a mile-long water bottle, and I was still thirsty.”
Her parents took her to the doctor, who immediately sent her to the hospital,
“It happened so fast. It was crazy,” Leah described.
That day changed their lives.
“When you leave the hospital after diagnosis, you know just about nothing about diabetes management,” her mother, Jessica Shwedel, explained. “You are taught the bare bones; finger sticks to check blood sugar, insulin injections at mealtimes and how to count carbohydrates, and it is terrifying.”
Doctors told them not to change Leah’s diet, but Shwedel said that wasn’t working. So she researched and found a Facebook support group that suggested a low carb diet.
“I started learning about it six months into the diagnosis,” Shwedel explained. “I was scared because it was the opposite of what I was told to do.”
But it helped, and Leah has stuck to this diet ever since. Yet it is still not easy. The entire lifestyle is an ever-changing balancing act.
“There are all sorts of things that change her blood sugar level,” Shwedel explained. “Growth spurt, loose tooth, the weather. The disease is so hard because there are so many factors.”
These factors can mean life or death.
“It is scary when not enough insulin and too much can kill me,” Leah said. “It is so stressful every day. If I don’t get it right or can’t fix it when it goes wrong, I could get sick and maybe even die, and it is so scary and so stressful, especially for my mom. She works so hard at keeping me safe and alive.”
The ever-changing puzzle means Leah’s levels must be checked around the clock. Her parents even get up several times at night to check her levels. Shwedel uses an app to check Leah’s levels when she is at Pelican Marsh Elementary School, and she works closely with the school nurse to make sure Leah is safe.
“You go from being a parent to being a full-time nurse,” Shwedel said. “The hardest part of the disease is not the shots. The hardest part is managing it. It can be so defeating.”
Leah gets a minimum of six shots a day. Some of them hurt. Others she does not feel at all.
“It was hard initially,” Shwedel described. “I remember coming home from the hospital and it was helpful for us to scream together. ‘Diabetes, we are going to kick your butt’. We would scream it together, and then I would give her the shot.”
Holidays like Halloween can be especially tricky, according to Shwedel.
Their family dresses up and goes trick-or-treating together. Later that night, Shwedel explains, the “switch witch” comes and takes the candy Leah and her brother collected and replaces it with their chosen toys.
Other holidays, such as Thanksgiving and Hanukkah, are easier to manage when they host the meals in their home using diabetes-friendly ingredients. “We always tell Leah there’s nothing she can’t have, “ Shwedel says. “There’s just a better way to make it.”
While life is centered on the disease, Leah also tries to be a normal 9-year-old. She likes to play with her brother Seth, 5 and watch videos on Netflix, She enjoys swimming, martial arts, theater, drawing, playing school with her dolls, playing Roblox and being with her friends.
“Sometimes I forget I have diabetes,” Leah said. “I have so much fun.”
“Those days are a blessing when we can put it at the back of our minds,” Shwedel added.
But Jessica and Scott Shwedel and Leah want it to be on the public’s minds. They are heavily involved with the Juvenile Diabetes Research Foundation. Leah has spoken at their annual fundraising gala for the last three years.
“It is good for Leah to meet other people and for her to know that she is not alone,” Shwedel said. “It is to empower her, and I think it has done just that. And it is to educate other people ultimately. It is so important to spread awareness so we can get better treatment and find a cure someday.”
Shwedel hopes a cure is coming soon.
“One of my biggest fears is when she moves out of my house and has to carry this burden by herself,” she explained. “I am hoping for better treatment before that.”
So Leah takes the stage and says it’s not scary speaking before a huge crowd, “I do acting classes so I am used to performing lines and doing dances,” she said. “When I get nervous, I just smile.”
Her speeches are a mixture of humor and serious facts.
“I want people to know that Type 1 diabetes is not easy,” Leah tells the audience. “In fact, it is totally unpredictable, like my little brother. My mom says she wishes it were her and not me, but frankly I think I am tougher than she is.”
This month Leah is heading to New York to speak in front of the Stem Cell Foundation.
“We will talk about what stem cells would mean for us,” Shwedel said. “The best treatment would be to get her body new beta cells to produce insulin.
The challenge is that her body doesn’t attack the new beta cells, or if they could find a treatment that would involve beta cells producing insulin without getting attacked.”
“I want to do it when they are 100 percent sure it is ok,” Leah said about stem cell treatments. “I don’t want to be a guinea pig. If I woke up tomorrow and there was a cure for diabetes, I would be very happy because I could eat snacks whenever I wanted them.”