Our March “Heart to Heart: T1D Caregiver Spotlight” is on Andrea Carlile! Andrea is the education department chair and assistant professor for the Flagler College-Tallahassee campus. She also serves on the JDRF Northern Florida board as the Advocacy Team Chair (ATC).

Andrea’s first type 1 diabetes (T1D) connection was her brother, who was diagnosed as an adult during his final year of graduate school. Later on, her own son Crew was diagnosed shortly after he turned three years old. When Crew was diagnosed with T1D, Andrea’s brother suggested that they reach out to their local JDRF chapter – the North Florida Chapter. Over the years, their family attended One Walks and participated in their own fundraisers as well. Eventually, Andrea stepped onto the Chapter’s Board, and later went on to become the ATC.

Andrea covers the 1^st through 6^th congressional districts in northern Florida, and her job as ATC is to use conventional methods, and create new ones, for reaching a wider audience and spreading the message about JDRF Advocacy. She has a wide territory in which it is crucial that she gathers as many volunteer advocates as possible to push for JDRF’s legislative priorities and respond to JDRF Advocacy action alerts.

Since Crew’s diagnosis 10 years ago, the Carlile family has participated in every local JDRF Walk and hosted their own events to raise money. Andrea’s commitment to JDRF’s mission and passion for advocacy is truly inspiring, as well as her drive and dedication to providing the best care for Crew. Below you will find some insightful, truthful advice from Andrea about being a T1D caregiver:

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

“Like other disabilities, living with T1D can feel lonely and isolating for the child and for the caregiver/parent(s),” says Andrea. “Getting involved with JDRF and other families that live with T1D has helped with this challenge.”

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

Andrea has continually found comfort with Crew’s pre-school, elementary school, and middle school caregivers, including the staff, teachers, and nurses. Their willingness to help the Carlile family manage his disease at school has given them peace of mind. Now 13 years old, Crew is in the eighth grade and involved in theater, soccer, and chorus.

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?

Andrea explains that when Crew was first diagnosed, he was quite young and not fully able to verbalize how he was feeling. “It was challenging to manage such an unpredictable disease with a toddler. As the advancements with T1D technology improved and Crew matured, management of the disease has gotten better, but not yet perfect. The continual need for research advancements still remains a priority for me so that children with T1D can live long lives without complications.”

Why did you decide to start volunteering with JDRF advocacy? Can you touch on why it’s important for T1D mothers and caregivers to come together?

“I started volunteering with JDRF Advocacy because it gave me a chance to tell our story and advocate for issues that are important to those living with T1D,” says Andrea. “Members of Congress appreciate the stories and real-life experiences that are shared when advocating for the issues important to those living with type 1 diabetes.”

What has JDRF meant to/done for your family?

Andrea and her family have enjoyed being involved on a local level with the JDRF Walk and Gala for many years. “We have met some amazing families that live with T1D by serving on the Walk committee and attending the Gala,” says Andrea. “Additionally, getting involved with JDRF Advocacy has allowed us to connect with other advocates all over the country.”

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

“When you are met with barriers related to your child’s access to accommodations at school or in the community, it is often due to a lack of education and awareness about type 1 diabetes. Connect with your local diabetes educators, fellow caregivers, or organizations like JDRF to gather resources and input.”

JDRF provides a helpful School Advisory Toolkit for Families that offers collaborative methods for educators and parents of children with T1D to ensure that every child enjoys the best possible school experience. You can view the guide here.

Living a couple hours away from a primary JDRF market likely could be challenging. Describe how you have made effort to create community in Tallahassee for JDRF families through volunteer leadership.

“Like advocacy, fundraising gives me a sense of power with my son’s disease,” says Andrea. “Finding creative ways to fundraise in our community through events has helped me build T1D connections locally while also benefiting T1D research.”

A True T1D Champion

We believe that because of parents and caregivers like Andrea, 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.