Jordana became a part of the Breakthrough T1D family after her oldest son, Josh, was diagnosed with type 1 diabetes (T1D) at the age of 8. Since his diagnosis, she has been actively involved with the Breakthrough T1D. From organizing Breakthrough T1D One Walk teams, to helping create a local support group for families sending their high school seniors off to college, Jordana and her family are dedicated to the Breakthrough T1D mission. We spoke with Jordana to hear more about her story.

JDRF: Jordana, can you tell us a little bit about your son’s diagnosis and how you found Breakthrough T1D?

Jordana: I was first introduced to Breakthrough T1D 10 years ago when Josh was first diagnosed. I still remember the first night he woke up to use the bathroom in the middle of the night. It was Memorial Day weekend and we were on vacation. It was the first time in years that he had to wake up to use the bathroom in the middle of the night, and I remember thinking that was unusual. Looking back, that was the first indication that he had diabetes. He wasn’t actually diagnosed for another month.

It was June, and he was finishing second grade. Between playing baseball and the unusual high temps that month, I rationalized his increased thirst. I remember the day after school finished, he took off his T-shirt and I could see the bones in his shoulders much more than usual. My instinct told me something was definitely wrong. I made an appointment with the doctor, and the next day we went right from the doctor’s office to the hospital. Within a few hours of receiving insulin, his blood sugar came down from 545 to 72. At the end of our 5 day visit, the hospital gave us a Bag of Hope from Breakthrough T1D. It contained very helpful and child- friendly items related to type 1. I was touched by the gift and called the local chapter a few weeks later. That is how we connected to Breakthrough T1D; they really introduced themselves to us.

JDRF: Why did you stay involved with Breakthrough T1D?

Jordana: Staying involved with Breakthrough T1D has always meant being a part of a community. Type 1 can, at times, be all-consuming. We deal with it 24/7. Staying connected to a group of people who understand the roller coaster of this chronic condition was very important to me. My husband and I were not only learning how to respond to his numbers, but learning how to teach Josh how to manage his own diabetes. I needed to surround myself with people who had more experience with type 1, people I could learn from. But I also needed people who were compassionate and empathetic. Breakthrough T1D introduced me to some wonderful, life-long friends and helped me create a strong support system for our family.

Type 1 can be a lonely disease, especially in the middle of the night, one that never goes away and never shuts down. My involvement with Breakthrough T1D always reminded me that we were never alone on this ride. This feeling of community helped me stay connected to Breakthrough T1D all these years. Together, we push through the difficult times, as well as find reasons to celebrate. I am deeply grateful for the power of community within Breakthrough T1D.

JDRF: How has Breakthrough T1D impacted your life?

Jordana: Over the last 10 years, Breakthrough T1D has helped me take the intangible frustrations of managing type 1, and do something positive with my energy. Raising funds with family and friends at the walks and golf outings, watching Josh participate in the Children’s Congress, helping wrap baskets for the Gala, starting support groups, all made me feel like I was doing something concrete to help not only our family, but others living with Type 1.

We started our “Power Pumpers” One Walk team the year after Josh was diagnosed and did that for about 6 years. I will always remember our bright blue t-shirts and the camaraderie and support I felt together with our friends and family on those brisk Sunday mornings in October. Between the walks and Josh’s participation in the golf outings, our family has raised a significant amount. That feels very tangible; the funding that we helped to raise really can make a difference, whether it’s used for research or developing new technologies.

When Joshua was in 6^th grade, we started getting involved in the Breakthrough T1D Golf Outing. Josh is passionate about conquering type 1, and he’s passionate about golf. We were moving away from doing the walks, and this was a great opportunity for Josh to combine two important aspects of his life. The golf outings provided an opportunity for other people to see the impact of type 1 firsthand. Here was this young child (and eventually teenager), playing golf really well, and playing it with type 1. The other non-type 1 adult golfers were able to see why they were playing in this fundraiser in the first place. They were able to meet someone who was wearing an insulin pump and sensor, had to be drinking juice or giving insulin while playing out on the course, and was testing before teeing off. He would speak during the dinner and the room would be hushed as they listened to their fellow golfer.  Being a part of the walk team during the early years, and the golf outings more recently, have been very meaningful experiences for us.

JDRF: You have become an outreach ambassador for Breakthrough T1D. How was that experience been?

Jordana: I have had the opportunity to work with Shannon, our wonderful Outreach Manager. She connects volunteers and newly diagnosed families. Once she gives me the name of a newly-diagnosed family, I reach out by phone or email and let them know they are not alone. I share with them how people initially reached out to me, giving me support and guidance and helping me through the first years. After Josh’s initial diagnosis, we felt so frustrated and depleted. We were working so hard to control his blood sugars and we weren’t having much success. Moving on to the pump and sensor helped significantly, but there was no doubt that those early years were exhausting and overwhelming. I leaned on Breakthrough T1D community during those trying years. There were some very supportive people within Breakthrough T1D who helped us through that difficult time.

I became an outreach volunteer simply because of the special people who helped me. Once I’ve made a connection with the new family, we will meet for coffee or talk on the phone. I try to communicate with them that it will get easier, while validating how difficult it is in the beginning. Everyone’s story is different. Children are diagnosed at all ages and different issues develop for every family. Empathy and patient listening are a big part of being an outreach volunteer.

JDRF: You started a support group for parents to help families prepare for college. Can you talk a little bit about that?

Jordana: Those of us who have juniors and seniors in high school can be very focused on sending our children to college. Those of us with children with type 1 have additional concerns. We were a community who found one another through Breakthrough T1D. There was a workshop on Taking T1D to College during TypeOneNation Summit. We were in a room with 40-50 other parents, all with the same looming concern: How would our kids fend for themselves in the very near future? My dear friend Eve Goodnow, who works at Breakthrough T1D, and I found ourselves surrounded by parents with all the same concerns. I sent around a sign-up sheet at the end of the workshop, hoping to meet again with others in this room and continue this important conversation.

We started meeting with parents whose kids with T1D has already gone to college and made that successful transition. We took copious notes on what worked and what didn’t work for their children. Then, eager to continue our conversation, we found a time and place and invited everyone from that initial list. We had an enthusiastic response and a very memorable meeting together. It was really helpful for all of us to know we were not alone in our concerns. Some of us in that group have become good friends.

JDRF: How is Joshua doing now?

Jordana: Joshua is doing great! He has been in college for about two months. He came home for his Fall Break a few weeks ago and it was a wonderful and very interesting visit. When he came home I said to him, “I’m happy to help you if you want a little break. I can do a few nights for you if you want.” He looked at me and firmly but gently said, “Mom, I’ve got this. I’m good.” I don’t think he saw that I got a bit teary. It was quite an impactful moment for me as I looked at the young man he has quickly become. Going to college changes most kids. Going to college with type 1 can make you grow up incredibly quickly.

JDRF: What would a cure mean to you?

Jordana: A cure means everything for our family. For Joshua and for us, it means more sleep, more freedom, less worry, and better health. It means not having the horrible highs and debilitating lows. It means eating freely. It means exercising without concern. It means not managing the cost of supplies and the temperature of insulin. It means not having the ever-present undercurrent of type 1 always running in the back of our minds, 24/7. But mostly, it means a normal life for my son, and for everyone living with type 1 diabetes.