THRIVING WITH TYPE 1 DIABETES Mahwah Teen Refuses To Let It Stop Her

By Kevin Czerwinski

Julia Ingrasselino believes there will come a time when she finds herself in a far-off ocean examining coral reefs, studying the mating habits of some exotic, rare sea creature or just simply enjoying a sunset out on the water.

The 13-year-old Mahwah resident hopes to become a marine biologist when she reaches adulthood. It won’t be an easy road – er, waterway – to travel. Yet, the impression you get after spending time with Ingrasselino is that there isn’t much this remarkable young woman can’t accomplish.

She has been living with Type 1 diabetes for six years and while dealing with her condition remains, in many ways, a full-time job, Ingrasselino has successfully rid herself of the shackles that often accompany this currently incurable autoimmune disease. Ingrasselino and her mother, Tracey, along with her 17-year-old sister, Vanessa, have formed quite the team, one whose vigilance has kept this dreaded condition in check, allowing the teenager to have dreams as big as the Earth’s oceans.

“My mom and sister think I am crazy that I want to be a marine biologist,” Julia Ingrasselino said. “I love going in the ocean; I love learning about sea animals. I’ve always been very intrigued by it. With my personality, I don’t think anything could ever hold me back or stop me from doing something that I want to do. If I am out in the middle of an ocean somewhere, I’ll have everything I need with me and there will always be someone there who can help.”

Tracey Ingrasselino has been the main person there to help since she first realized what was happening to her daughter, who began experiencing mood swings, was wetting the bed and was always thirsty, all telltale symptoms of Type 1 diabetes. Tracey Ingrasselino, who works for Johnson & Johnson in the fields of immunology and biologics, was all too aware of the signs.

Her worst fears were confirmed when she pricked her daughter’s finger to test her glucose levels. The results flashed that the number was unreadable, that’s how high her levels were. That was on Sept. 29, 2016, the day both their lives changed.

“It was devastating,” Tracey Ingrasselino said. “I took a picture of her on the way to the hospital. She had no idea. She was smiling and happy. To be honest, in my head, I

was thinking at that point just let her have one last weekend because because I knew what was ahead of her.

“From day one, though, we became very involved with pretty much anyone who could help us. Our lives changed forever.”

Julia Ingrasselino reacted as any 6-year-old would – she thought what whatever was wrong with her would go away in a month, not understanding that what was going on inside her would impact the rest of her life. Slowly, though, as she and her family learned more about her condition, Julia Ingrasselino began to come to the realization that this wasn’t going away.

With that realization came the process of learning how to eat, recognize the signs of an issue and generally take care of herself in a way that would help keep the disease in check. Teachers, nurses and school administrators were looped in to make sure that Julia Ingrasselino would receive the immediate required attention should she have an episode in school. Emergency boxes were created for classrooms in case of a lockdown while sharps containers and other essentials were added to the Ingrasselino home.

“She was also the first one at the Lenape Meadows [Elementary School in Mahwah] to have Type 1 diabetes, so there was a learning curve for principal, the nurse, even the school system,” Tracey Ingrasselino said. Supply bags have become a staple in the family’s life. They never travel without the necessary equipment, whether that be snacks, drinks or an extra glucose monitor or two, all of which is required to keep Julia Ingrasselino safe whether it’s a trip for work, a day of shopping or a family vacation.

Along the way there have been constant visits to the Naomi Berrie Diabetes Center at Columbia University Medical Center, a great many sleepless nights as well as the adjustments that come accompany having Type 1 diabetes. Tracey Ingrasselino joined support groups and has become so knowledgeable about Type 1 diabetes that many parents who have just found out about their child’s condition reach out to her for help and support. Julia Ingrasselino, meanwhile, refuses to live anything other than would be considered a normal teenage life. She plays sports, goes to the shore with her family and friends and has even done so acting.

“I have done some acting in one big production; I’ve done acting for church and had some pretty cool opportunities,” she said. “It has changed my life. I’ve met some really close friends from acting and having diabetes hasn’t held me back from doing a show or anything like that.”

Julia Ingrasselino has gone to Diabetes Camp several times as well. It’s run by the doctors and nurses at Columbia and the children can engage in regular camp activities, such as ziplining, sports, etc. There have been countless fundraisers and Diabetes Awareness Walks and she even participated in a diabetes documentary produced by Becton Dickinson, one the world’s largest medical technology companies, which is headquartered in Franklin Lakes.

“The lows are scarier, more so, than the highs,” Tracey Ingrasselino said. “I have literally not slept in seven years because there is something called dead in bed syndrome [when a person with insulin-dependent diabetes goes to bed fine but is later found dead]. She slept with me the first few years, that’s how scary it was at night. She didn’t have a CGM at that point [she got her first one five years ago] so we had to prick her finger every night.”

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Now, however, Julia Ingrasselino is what her mom calls a professional sleep juice box drinker. She can wake up when she feels the need or when the CGM monitor beeps and drink the juice. Many times, she doesn’t even remember doing it.

“No two days [or nights] are the same,” Tracey Ingrasselino said. “We just had a bunch of lows in the middle of night, she had four juice boxes one night, so you can’t predict what’s going to happen. Originally, we set an alarm clock but there came a day when we didn’t need one because the body just wakes up. The CGM gives you piece of mind and I’m glad she got to a point that she decided that she wanted to be in her room again. You have to encourage independence.”

Julia Ingrasselino is ready for that independence. She will be in high school before long and then college and then, she hopes, somewhere out in the Atlantic or Pacific Ocean doing what she loves best. So, being able to take care of herself properly remains part of her daily routine.

The required vigilance and selfcare is also important if Julia Ingrasselino is to have what is considered a normal life expectancy. According to Diabetes Daily, the average life expectancy of a type 1 diabetic can be as much as 12 years shorter than the average. She said she is aware of what could be ahead but isn’t worried.

“Life expectancy has come up,” said Julia Ingrasselino, who is also a Youth Ambassador helping to spread the word about Type 1 diabetes, offering support and help for anyone in need. “As long as I take care of myself, I know I will be good. As long as I am okay and know that I will be okay I think I’ll be fine. My friends support me, my mom and my sister support me, they’ve all been a big part of my life. As long as I [continue to] have them, I’ll be fine.

“In 10 years, I see myself as someone people can look up to and say she is pretty amazing. She has lived with diabetes for a long time. When I am older, I want it to be a big part of my life. I want to be able to make people more aware.”

The Show Me Your Heart Foundation held an “Art Within” benefit at a beautiful home in Mahwah. For more information, visit www.smyhfoundation.com.

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