Lia Benn recalls it as her “mommy intuition” when she had a feeling something wasn’t right when her, then 22-month-old daughter, Julia, was regularly wetting through her diapers. Lia decided to take Julia to their family pediatrician and have her tested for type 1 diabetes (T1D). After testing, the pediatrician returned, with tears in her eyes, notifying Lia that her daughter has T1D.
Upon confirmation of her daughter’s T1D diagnosis, Lia and her husband, Greg, were in shock. Julia spent five days at University of Michigan Hospital in a ward with much sicker children. It was an attitude-changing moment as Lia and her family realized things could be much worse than a T1D diagnosis.
Julia, now 4 years old, and her family live anything but “normal” lives. There is not a single night that goes by that Lia doesn’t have to wake up to test Julia’s blood sugar levels. In addition to life at home, the Benns also have to educate coaches and teachers about T1D whenever Julia starts new swim lessons, dance lessons or starts a new grade. To help combat the struggles that T1D brings, Julia uses two devices, including a Continuous Glucose Monitor (CGM) and, for the last six months, an OmniPod insulin pump.
“A young child diagnosed with T1D presents a lot more challenges since they can’t communicate how they are feeling,” said Lia. “Technology like CGMs and insulin pumps make a world of difference in battling this life threatening disease.”
Although Julia’s peers are now at the age where they notice her T1D devices, Julia has developed wonderful coping mechanisms at a young age to handle these situations. One of which includes telling her peers that her devices are responsible for her magic powers and that messing with them could take those powers away. Lia added, “You just have to admire her creativeness and positive attitude.”
Since Julia’s diagnosis, Lia has been involved with JDRF. Her mission for over the past two years has been to raise as much money for JDRF as possible to help fund critical research, educate as many people about T1D as she can, and make Julia’s life as normal as possible.
Starting as a committee member for the JDRF Gala, Lia found herself getting more and more involved with JDRF events, including the JDRF One Walk and JDRF’s Young Leadership Committee.
Lia’s passion for educating and helping families with children diagnosed with T1D even led her to start an online mentoring program called “T1D Littles.” She started the group two years ago to help local families dealing with T1D children under the age of 5. Said Lia, “At that age kids with T1D have much different issues and needs that can be overwhelming at first for parents.
Walking for their third year in a row, the Benn family joined more than 2,500 advocates representing local businesses, families, schools and other organizations at the JDRF One Walk in Dexter, Michigan as Team Julia’s Jedi.
The JDRF One Walk has a single goal: To create a world without T1D.