May’s “Heart to Heart: T1D Caregiver Spotlight” is on Tony Boloutchi! Tony is a Business Instructor at the Florida State College at Jacksonville (FSCJ) and also serves as the North Florida Territory Manager for Kaplan Early Learning Company. He lives in St. Augustine with his wife, Jennifer, and their three children, Emma, Jack, and Kate. They also have two furry friends in their home, Labradors named Lucy and Daisy!

Tony’s son, Jack, was diagnosed with T1D at the age of six. Throughout the past ten years, Tony and Jennifer have worked to learn how to best manage Jack’s T1D as he grows up. He has gone through all the highs and lows with their family, and learned some helpful tips for caring for a loved one with T1D. Below you will find some insightful, realistic advice and information that comes with being a T1D caregiver:

Throughout your child’s T1D journey, what have been the biggest challenges you faced?

 “Living with T1D for the past 10 years has been a real challenge; it is always there, it never leaves,” explains Tony. “We think about it, and take time out for it 24/7, 365. There are no T1D holidays. Teens with diabetes are a unique challenge because they don’t always eat at regular times, and when they do, the carb intake can get very high with big meals. COVID took us completely out of our regular routine and the constant threat of illness was scary.”

Getting through the teenage years with T1D can be difficult, whether it’s a new diagnosis or you’ve been dealing with it for years. JDRF has tools that can help make your journey a little smoother. Visit www.jdrf.org/t1d-resources/newly-diagnosed/teens/ for more T1D teen-specific information and resources.

If you’re looking for local support in the Northern Florida area, send an email to northernflorida@jdrf.org and we will make sure you get connected with other families, support groups, and events we host throughout the year.

While adjusting to life with a child with type 1 diabetes, are there certain things you found that helped you better manage their disease? What about something that helped give you hope when you were just getting started?

When Jack was first diagnosed, the Boloutchi family knew very little about diabetes and how to manage it; it was lots of shots and finger pricks, as well as many sleepless nights.  “Resources like JDRF and our endocrinologist were vital to our success,” says Tony. “JDRF empowered us by welcoming us into the local T1D community and introducing us to the many, many families in our same situation.”

Tony explains that technology like Insulin pumps and glucose monitors have greatly improved their living with T1D. “In the past 5 years, the internet DIYers have taken diabetes to a whole new level. They are currently LOOPING using Omnipod EROS pumps and Dexcom G6 continuous glucose monitors.  The LOOP app allows those devices to work in tandem to automatically adjust Jack’s blood glucose levels. The technology has worked so well that endocrinologists are starting to track TIR (time in range) percentage as a replacement to A1C in determining successful personal diabetes management.”

“When we started this journey, it was “find cure, or nothing.”  Now we are excited and hopeful that the next generation of fully integrated bi-hormonal pumps will make diabetes management as easy as charging an iPhone.”

What skills/lessons has raising a T1D child taught you? For a parent of a newly diagnosed T1D, how would you compare those feelings to now?

“Raising a child with T1D has been humbling,” says Tony. “We worked every day to protect our children from all of the world’s troubles.  Then, one day, our son comes close to death without much notice. It was painful that we had been missing the signs that were right there to see if we knew what to look for. If Jack had died, we would have never been able to forgive ourselves.”

Once they educated themselves about T1D and how to manage it, the Boloutchi family began trying to spread the word about the signs and symptoms of what to look for in a child with undiagnosed T1D. “We know now that it is not our fault that he has diabetes.”

Can you touch on why it’s important for T1D caregivers to come together?

Tony explains that there are a lot of resources to learn about T1D on the internet, but there is nothing like learning from other families that are in the same situation. “The best practices and innovations have come from T1D parents and loved ones trying to improve the lives of T1D children.  It takes people living with T1D to really understand what it’s like.  T1D families are an enormous source of comfort and T1D caregivers are some of the best advocates for the community.”

What has JDRF meant to/done for your family?

 “I can’t imagine what the last 10 years would have been like without the support of JDRF,” says Tony. “Most of the diabetes management, tips, and tricks we have learned have been directly from families we met through JDRF.  The local community events like the JDRF One Walk and other annual events are times of sharing, but they are also a reminder that there is still much work to be done.  T1D is an individual disease, but nothing you want to go through completely alone.  JDRF brings a fellowship and love, instead of pain and isolation.”

JDRF has many support groups for those living with T1D and their caregivers – for more information, visit jdrf.org/t1d-resources/personal-support/.

What is the most important thing you would want other parents of children with T1D to know?

Tony says that his best advice for other T1D caregivers would be to not blame yourself or your child for diabetes. “Also, don’t try and learn everything all at once.  Learn the basics with your child.  Involve them in everything and make it a family mission to make diabetes a plan, not a problem.”

A True T1D Champion

We believe that because of parents and caregivers like Tony, the children living with T1D in our community are given the support and care they need to succeed in life and in managing their disease. To anyone caring for a child with T1D, please know that you are not alone in the sleepless nights and heavy days. JDRF Northern Florida is here to help you and can connect you with a network of other T1D caregivers to share advice, struggles, and words of encouragement.

For more information or to submit someone for our “Heart to Heart: T1D Caregiver Spotlight,” please contact Brooks Biagini at BBiagini@JDRF.org.