June’s “Heart to Heart: T1D Caregiver Spotlight” is on Mallory Rogers from Central Florida! Mallory and her husband, Andrew, recently moved from Utah to Central Florida with their daughter, Addie, last year. As a family, they love to go to Disney World (perks of living in Central Florida!), visit Farmers Markets, and explore local restaurants, stores, and museums. They also have a chihuahua terrier rescue named Charles Sherlock Fitzgerald. Addie likes to call him ‘Charlie Boy!’

Addie was diagnosed with T1D just after her second birthday in September of 2021 – she turns 4 this summer. After Addie’s diagnosis, the Rogers family had to spend a couple days in isolation in the pediatric ICU because Addie and Andrew had tested positive for COVID the week before; they say that it was a long, lonely, difficult few days. She now uses the Dexcom as her CGM and Omnipod as her insulin pump. They also did MDI for a little over a year following her diagnosis.

Addie loves art projects, dance class, science experiments, and playing at playgrounds. “She is a music aficionado and requests to listen to everything from Vivaldi to The Beatles to Black Eyed Peas (we get a kick out of her music moods),” says Mallory. “Addie learned how to write her own name recently and is very proud of this new skill.”

Almost four years since Addie’s diagnosis, Mallory and Andrew have worked to learn how to best manage her T1D as she grows up. Mallory 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?

“Our biggest challenge has been asking caregivers to take on the extra responsibility,” says Mallory. “We have now found several wonderful babysitters (thank you to Jules, Trinity, and Semaiah! We appreciate you so much!) and a daycare who is diligent about Addie’s health and safety.”

The interrupted sleep to treat lows or do emergency device changes can also be a challenge. At first, the challenge was making sure Mallory and Andrew woke up to the low alarms. She set up an applet on the app ‘IFTTT’ to call her anytime Dexcom sends a low alert. Now they don’t miss alarms anymore!

“We’ve also discovered that some extra planning when it comes to swimming is helpful,” explains Mallory. “We try to do our best to time device changes several hours before swimming to allow the adhesive to settle, and we love overlay patches (especially ones that go over the device, not just around the adhesive for the device).”

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?

“I’m a bit of a bookworm (could you tell from our dog’s name?), so I found several books to read in the months following diagnosis,” says Mallory. “I joined online support groups. I gave myself the mantra, ‘Kid first, diabetes second’ to help drive my decision-making and I constantly reminded myself not to make fear-based decisions. If Addie wants to do something, I have to shove my fear aside and find a way that we can make it happen (safely, of course).”

Mallory also found hope in talking to a friend who was also diagnosed with T1D very young, as well as following accounts of other people with T1D sharing their lives – knowing that she wasn’t alone was very helpful.

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? 

“When Addie was first diagnosed it felt like this new version of life was going to be all-consuming and things would never feel normal again,” explains Mallory. “I’m happy to say we’ve adapted to it, and the device changes, carb counting, and insulin dosing are just a part of the rhythm of our life now.”

Occasionally, the family says they dip back into overwhelming feelings (like last week when they went to a birthday party and in the first 5 minutes Addie’s Omnipod just fell right off even though we had an overlay on!), but they’re much rarer now.

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

Mallory feels a lot of fatigue around all of the extra decisions and worries that come along with a T1D diagnosis, but explains that it’s nice to be able to talk to other people who experience the same thing without having to explain all of the ins and outs of caregiving.

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.

What has JDRF meant to/done for your family?

The Rogers Family has gotten completely involved with JDRF since they moved to Central Florida this last year! From attending the Orlando One Walk and Addie getting V1P status, which is a huge source of pride for her, to Andrew signing up to be part of the JDRF Running Team at the Disney Half-Marathon later this year. They’re excited to cheer him on in his fundraising and training!

Further, Mallory exclaims that they “LOVE the Rufus bear and the app to care for Rufus’s diabetes. “Addie also loves to read the books that were sent in her Bag of Hope.”

JDRF’s Bag of Hope is filled with useful resources for both the child who has been diagnosed with T1D and their caregivers. The bag also includes Rufus, the Bear with Diabetes®, to help them not feel alone while learning to take shots and test blood sugar. To learn more about the program or to request one for yourself or someone with a recent T1D diagnosis, please click here.

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

“We started keeping a stash of low snacks upstairs for nighttime lows. GAME. CHANGER.”

A True T1D Champion

We believe that because of parents and caregivers like Mallory, 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 Dori Rivers at Drivers@jdrf.org.