Christine DeYoung knew something was wrong with her daughter when, at 13 months old, she was crying more than usual and soaking through her diaper. The pediatrician reassured her everything was OK—it was likely a bug, and it would pass. But there's something to be said for a mother's intuition because Christine persevered. She tried again and again and again—for a total of four doctor visits in one week. On the last appointment, Cole was diagnosed with type 1 diabetes (T1D) and rushed to the hospital. 

Eight years later came another blow to the family: Christine's older daughter, Lexi, was also diagnosed with T1D. She was 12. 

"My sister and I are probably the greatest case study ever," says Cole, now 26. "T1D has always been part of my life, so I grew up being really open about it." For Lexi, however, the diagnosis cleaved her life into a before and after, making the transition tougher. The challenges would compound, too: Lexi also developed celiac disease and an eating disorder. Still, by the time they were adults, the two were thriving. 

All of which makes this next part harder: Last summer, Lexi passed away from hypoglycemia after having the flu for several days. "There's no good way to lose a child, but we feel fortunate she was happy and at the top of her game," says Christine. "She helped so many people and did more than most of us do in our lifetime."

Here, the mother-and-daughter duo share their story and T1D advice.

From left: Lexi, Christine and Cole DeYoung

Tell us about the family's T1D journey...

Christine: It started in 1999, with Cole's diagnosis when she was 13 months old. Half an hour after her pediatrician finally gave her a urine drainage bag, we found out her blood sugar was 1,100 mg/dL [the standard range for a child is 71-180 mg/dL]. We went straight to the hospital.

My older daughter Lexi was 12 when she was diagnosed. She came in the kitchen one morning around 8 AM—which was late for her—and poured herself a glass of water, which also wasn't normal. I looked and her jeans were falling off. I hadn't noticed that she had lost a lot of weight or that she was sleeping in because she was too tired to get out of bed. I asked if I could check her blood sugar. She said she didn't have diabetes. I asked again, and she started crying. It turned out to be 700 mg/dL. A year after that, she was also diagnosed with celiac disease.

Both were diagnosed at vastly different stages. How was the experience different?

Christine: The differences were pretty dramatic. With Cole, since she was a baby, she really didn't know anything else. With Lexi, those first few years really took a toll.

Cole: I don't remember anything different, which I've always seen as a blessing. Being diabetic is built into my DNA. When I learned math, I learned to count my own carbs. When everyone was packing for Disney World, I made sure to pack my syringes and insulin. First day of class, I would explain my diabetes kit to my friends—which I would do proudly because it was pink and I loved it. I was therefore really open about my diabetes and really open about asking for help.

My sister knew what it was like to be "normal," and had to relearn how to live. After she was diagnosed, she was embarrassed about it for a while. My parents helped me feel normal by making sure I had the most cutting-edge medicine; she wanted to feel normal by not wearing the cutting-edge stuff. She resented the disease and pushed away some of the care that was there for her.

What has been the most challenging part about living with T1D?

Cole: The more recent years, from college on, have been more challenging. I get frustrated and emotional thinking, What if this wasn't my life? Like, I wish I could eat and not have insulin. Or I did everything right but made one mistake and now I feel awful. Or your blood sugar's low and you're worried your boss is going to think you're not as productive as the person next to you.

How do you get through those tough moments?

Cole: Mental health plays a big part. I never felt unlucky about diabetes because I was so used to it; it's not really a choice. Yes, this sucks, but I'm going to keep going. If you don't, it's going to ruin the rest of the day, the week, the month—so you forge on. You either fix it now or it doesn't get fixed—there's no in between.

What about you, Christine? As a parent, what has been the most challenging part?

Christine: Watching your child be at an unexpected and consistent disadvantage. My kids have to work so much harder than everybody else to show up and to accomplish their goals. But life can be enriched by going through hardship as a family. We've made a lot of good out of it. Lexi changed thousands of lives and Cole continues to do this on so many levels. And their brother Tucker, who was very close with them, has grown into a young man with more depth, empathy and respect for others based on the hardships he saw them endure. He is an officer in the Army now and that's his greatest asset in supporting those facing challenges.

What was Lexi like? Could you tell us about her T1D experience?

Cole: My sister was smart, an incredible athlete and fiercely independent. She got herself a merit scholarship to go to boarding school. We were really proud of her. But two years in, she developed an eating disorder. I think she let the perfectionism get the best of her. She came home and started doing treatment for it.

Christine: We understand now that 80 percent of young women with celiac and T1D get an eating disorder. You never know how somebody processes their own disease.

Cole: Jump forward a couple of years. She moved to California, started bodybuilding and became really healthy again. She eventually started a business coaching women on their health and wellness. She was amazing at it! She was in the best place she'd ever been. After she passed, the words people used most to describe how they felt about her were understood, safe and supported—Lexi made you feel seen.

Christine: She touched so many people. A thousand people told us she saved their life. Another thousand told us she changed their life. Not a lot of people get to say that.

What do you want people to know about T1D? The invisible struggles only those who live with it intimately know?

Cole: The mental aspect. Diabetes is hard. Every time I eat, drink or exercise, I have to put in the mental calculation and then do the emotional damage control if it's messed up. You're dealing with this every moment of every day.

Christine: You have to seek out the people who uplift you and steer clear of those who don't. There are the parents who follow their kids around to make sure they're OK and those who help them learn and show up for themselves. Neither is wrong, but I knew the first was not going to fit for our approach. We surrounded ourselves with the second.

Words of wisdom to those struggling?

Cole: Find that inner strength to take care of yourself and find your support system. Because we are responsible for ourselves and, if you can find people who can help you, then you're not bearing that weight alone. And there's a silver lining to having this disease: you will learn to be more in touch with your body than most.

Christine: For the parents—there's nobody who is needed more than you. You can make an impact just by having a positive attitude. And get a great therapist. Because you get all these calluses and scars when you endure things and, sometimes, you need to shed them to become a better parent. A professional can help.

What has being involved with Breakthrough T1D meant to you, personally?

Cole: I don't know what my life would be like without it. All the technological advances and changes in my care have come from the work it's done. Most of my diabetes educators and most of the other kids I knew with diabetes came from the organization. My earliest memories of being diabetic are the Walks (which I thought was a second birthday party for me!). As I got older, I helped lobby for bills as part of its Children's Congress. I feel really lucky to be a part of it.

Christine: Breakthrough T1D gives me hope. I feel very fortunate we have an organization that's so strong and has the scale that it does. They've brought the science community together, in ways that others can't, to eradicate this disease.

How can friends and family best support a loved one with T1D?

Cole: Recognize that T1D is a strength, not a weakness. Recognize that it's a lot to deal with and that they're stronger for it. Because this can be the difference between someone being open about their struggles vs. someone wanting to hide them. And when they have acceptance, the easier things become.

From now to the end of September, VB Gives Back commits to raising $250,000 for Breakthrough T1D through consumer donations, in-store give-back events, and $5 from every online order to elevate awareness and support for Type 1 diabetes research, advocacy and community engagement. Learn more here.

If you want to learn more about T1D and Breakthrough T1D’s mission you can visit their website at BreakthroughT1D.org.