A couple of years ago, when Jessica and Pritesh Patel’s son Avhon was just a year old, something started happening to his health.
For about two weeks, the Patels, of Lancaster, ferried Avhon back and forth to their doctor's office to try to find out what the problem was. The doctors told the Patels that Avhon had contracted a virus and prescribed antibiotics. Then one day, Avhon turned pale and started breathing heavily. The Patels rushed their baby to the emergency room.
At first, the doctors thought Avhon was having an asthma attack, but then an EMT who happened to be on the scene intervened and suggested that this was something even more serious. The doctors checked Avhon's blood glucose level. It was over 700 mg/dl (milligrams per deciliter). According to the medical center the Cleveland Clinic, a normal fasting blood glucose level is 70-99 mg/dl.
Avhon was going into diabetic ketoacidosis — a potentially fatal condition. Jessica Patel and Avhon flew to Hershey to receive treatment, and there, he was diagnosed with Type 1 diabetes and hypothyroidism — a condition where the thyroid gland doesn’t produce certain hormones. The diagnoses came as a shock to Avhon’s mother.
“You don't think for one second that your 1-year-old has diabetes,” Jessica Patel says. “I felt kind of helpless. It was very overwhelming.”
So, in an effort to help other families navigating the diagnoses, she wrote “Super Sugar Baby,” which explains the disease and shows that kids living with diabetes can still enjoy a full, rewarding life.
Type 1 diabetes is an autoimmune disease where person's body attacks the pancreas and cannot produce insulin — a hormone necessary to get glucose from the bloodstream to the cells. Type 2 diabetics’ bodies can typically still produce insulin, but not enough, or the insulin doesn’t work properly. Type 2 diabetes can be prevented or managed. Presently, there is no known cure for Type 1 diabetes.
‘Super Sugar Baby’
Avhon is now 3 years old and doing fine. The Patels educated themselves about healthy diets and how to deal with the rapid decreases and spikes in Avhon’s sugar levels.
“It’s a rollercoaster,” Patel says. “There will be days where sugars are just nonstop dropping. It’s like his pancreas is saying, ‘Let’s just mess with you today.’ ”
After Avhon's initial diagnoses, the Patels attended classes to learn more about how to navigate life with Type 1 diabetes.
“I think parents should have more education on diabetes and other immune diseases,” Patel says. “I wish I would have known more. There are a lot of children out there that have diabetes that don’t get diagnosed until it’s too late.”
Patel decided to write a children’s book to help with that education, and to empower young children with Type 1 diabetes and show them they can lead normal lives. Patel and Avhon’s older brother Amaje, 9, spent six months creating the story of “Super Sugar Baby.”
“Amaje is amazing with it. He knows how to count carbs. Amaje even taught Avhon how to get on the iPhone and check his Dexcom app (an app for monitoring blood sugar levels),” Patel says. “He’s been such a good big brother.”
“Super Sugar Baby” provides a fun look at what happens inside the body of a child with Type 1 diabetes while showing that those with the disease can live healthy lives. The book follows the story of Super Sugar Baby, his dog NumNums, Sir Insulin and King Dance A Lot (a character based on Amaje, who loves breakdancing) as they save Queen Pancreas from the clutches of the Evil Glucose and his cranky ketones.
After coming up with the initial story, Patel enlisted the help of her mother, Tina Serrano, a teacher for more than three decades and author of nearly a dozen children’s books. Serrano edited the story and created artwork for the book.
“I make paper doll characters out of cardboard and colored paper and use paint and markers,” Serrano says of her process.
Serrano uses the same method to create bulletin boards for her classes.
Serrano says she’s been impressed with how Jessica and her family have been handling Avhon’s diabetes.
“As a grandmother, you want to fix it. You hurt for daughter and grandchild,” Serrano says. “It’s amazing how they work together as a family to deal with this. To help Avhon have a normal childhood.”
And Serrano wants the book to provide other families with inspiration to be able to help their children in the same way.
“I hope this book helps a lot of people to understand what’s going on within their body and emotionally within the children,” Serrano says.
Jessica and Avhon Patel.
Patel notes that though Type 1 diabetes is much different than Type 2, parents should understand more about both diseases and the benefits of diet and exercise.
As for Avhon, diabetes hasn't slowed him down.
“That child loves to dance. He loves music,” Patel says.
And his brother Amaje is teaching him how to breakdance.
“We don't treat him like he’s frail at all,” Patel says. “We treat him like a normal 3-year-old toddler.”
She says that his diabetes has made Avhon even stronger, and he doesn’t let anything stop him.
“He’s the most determined, strong-willed, stubborn baby I’ve ever met,” Patel says. “Avhon is a superhero. He’s super sweet.”
