Nick Jonas was only 13 when he was diagnosed with Type 1 diabetes, but his career was already on the rise. The band he’d started with his brothers Joe and Kevin, aptly named The Jonas Brothers, was well on its way to stardom, opening for Kelly Clarkson and the Backstreet Boys. The diagnosis shocked the family, but they quickly regrouped.
“We decided this new normal could be something magical and special,” says mom Denise Jonas. “Educating and being an inspiration for other diabetics became a family goal.”
That’s why Denise was thrilled to team up with Disney and Lilly Diabetes to help promote a Type 1 diabetes education initiative that includes an informational website (family.com/type1) and a series of children’s books starring a monkey, Coco, as a Type 1 diabetic. To celebrate the launch, Disney is asking parents and caregivers of children with diabetes to share their stories in a creative way, and will choose one winning family to attend a national conference in Orlando next July.
Nearly six years after Nick’s diagnosis, Denise talked to SpryLiving.com about that scary day, what she wishes she knew back then and what she hopes all caregivers will take from her family’s experience.
Spry: What were Nick’s initial symptoms?
DJ: Nick was on tour when we first started the process. He’d been experiencing an increase in appetite and needing to use the restroom. He’d had weight loss, and an attitude change. It really was so unlike Nick, so we decided he needed to see a doctor.
Spry: What was the family’s reaction to the diagnosis?
DJ: It was a very dark day. There was a sense of loss and emptiness. But at that moment, the family made a decision: Let’s turn this around. Let’s use it as an inspiration platform for others. There’s so little knowledge out there—we wanted to change that for others.
Spry: What kind of emotions were you going through as a mom?
DJ: I was devastated. First there was a sense of guilt, like “What did I do wrong?” Then I wondered, “How can I allow him to do the things that he wants to do? Touring? Performing? Is he going to pass out on stage after doing a huge drum solo?” I really needed someone to come along and help me understand, a simple resource. And that’s what this website, family.com/type1, is going to do. It covers the day-to-day practicalities of living with diabetes.
Spry: That must be common, that after the shock of the diagnosis, people have a lot of practical questions about how to get through the next day and the day after.
DJ: Yes. Things like how do I send him off to school for 8 hours without me? What do I do if he wants to go to a friend’s birthday party, and I’m not there to monitor his blood sugar? You go home from the doctor and it’s like, “How do we return to normal life?” I needed that inspiration as a mother. I didn’t know anyone in our situation.
Spry: Do you think families in this situation often feel isolated?
DJ: Yes, that’s why I’m so excited about this website. For the launch, we’re having a contest called “Once Upon a Time.” Parents or caregivers can submit a poem, a simple story, essay or even a song inspired by their child’s experience with Type 1 diabetes. I love to hear other people’s stories. It gives you a boost, makes you feel like you’re not alone in this.
Spry: How is Nick managing his diabetes these days, especially with such a busy schedule?
DJ: Nick always was very in charge of his own diabetes, which allowed us to be very supportive of his career. He has a great connection with his healthcare team; he works really closely with them. He makes sure to stay in great health, exercising a lot. And his diet and nutrition are tremendous. He probably eats more healthfully than I do! I don’t always know exactly what’s on his plate, but I always know it will be healthy. He’s really smart about his choices. He also knows his limits.
Spry: What advice would you give to parents of a child who’s just been diagnosed with Type 1 diabetes?
DJ: I just like to encourage them and let them know it’s not the darkest day of their lives. There is hope. Kids have a lot of dreams and goals, and it’s really important to communicate what they can do and not be focused on what they can’t. It can be a normal, healthy life. Also, there’s so much available now, in terms of resources and technology — and we have a lot of that to look forward to in the future. It’s a blessing. You can live a wonderful, rich life with diabetes.