Congrats again to the 10 winners of our 2017 DiabetesMine Patient Voices Scholarship Contest, announced earlier this summer! Over the next several weeks, we'll be featuring an interview with each.2017 Patient Voices Winners

This leads up to our annual DiabetesMine Innovation Summit, happening in mid-November at Stanford School of Medicine, which brings together key movers and shakers in the diabetes industry, regulatory, medical, tech and patient advocacy communities -- and we're excited to extend scholarships to our PV winners!

First up, meet D-Dad Seth Tilli in New Jersey, whose 3½-year-old son Liam was diagnosed with T1D a little more than two years ago -- yes, as just a toddler! Seth works in wholesale distribution and his wife Jessica is a school teacher, and you can't question their D-devotion as the couple's gotten inked with a tattoo of the Beyond Type 1 blood drop logo. He also created a cool "TypeOneNone" watchstrap not long after his son's diagnosis, and Seth believes more advocacy needs to happen on getting simple blood sugar checks done in pediatricians' offices. We're happy to introduce him here today.

(Thanks to my colleague Mike for his work on this first in our series of interviews.)

 

An Interview with D-Dad Seth Tilli

DM) Seth, can you start by telling us how your family got introduced to diabetes?

Our son, Liam was diagnosed with T1D in April 2015, when he was just 14.5 months old. Parents of children like Liam, who are diagnosed so young, typically find out their child has diabetes once he or she is already in crisis. That is what happened to us. For a few weeks, Liam seemed aggressively thirsty and started peeing more than usual, soaking through his diapers at night. A college friend of my wife's is type 1 and the description of his own onset was very similar to this. Because of that, we started having concerns that Liam might have diabetes. We have no family history on either side and it seemed absurd to think a healthy, organic-eating, breast-fed baby could possibly have something like diabetes.

Thankfully, Liam is now 3½ and is a brilliant and creative little guy. He loves music and playing drums, dinosaurs, and all kinds of sports!

So his diagnosis was a pretty traumatic experience?

I'd say so. Liam began to get sick from what we thought was a bad cold. When he became incredibly lethargic we took him to his pediatrician who ignored the suggestion of diabetes and instead diagnosed him with strep throat and sent us home with antibiotics. That night, as he grew sicker, our pediatrician assured us that this was typical of strep on a small body. The next morning, as his breathing became labored and all he wanted to do was sleep, we knew we had to take him to the emergency room. Fortunately, I was working from home that day and was able to make an immediate decision to take action. 

Nothing prepares you for watching your baby struggle to live. As nurses attempted to get needle after needle into our dehydrated baby, we watched completely helpless. It was the worst feeling in the world. Liam was in DKA, his BG was 492, and his blood pH level was 6.9, a level the body can only sustain for a short period of time. Had we not taken him to the hospital when we did, it is very hard thinking about what could have happened to him.

Were the doctors adequately prepared to deal with a toddler in DKA?

Actually, the doctors told us we needed to be transported to a hospital better suited to care for Liam, and only one parent could go. My wife rode in the ambulance next to Liam, who was hooked up to a machine to deliver fluids and insulin, and held his tiny hand while he went in and out of consciousness. We arrived at the Children's Hospital of Philadelphia (CHOP), an institution we are incredibly fortunate to live near. They brought us to the pediatric intensive care unit and she held Liam throughout that very long first night in the hospital. Every hour on the dot, the nurses came in to finger prick him and draw labs. They wouldn't let her nurse him and that is all he wanted to do. It was by far the hardest night of our lives. Jessica slept for maybe 45 minutes that night, unable to sleep with him laying on her and nurses waking him to check his blood glucose level so frequently.

In the morning, his levels started to get better and by that afternoon they moved us to the Endocrine floor, where we would spend the next three days learning how to keep Liam alive. We learned how to be his pancreas.

How was it, realizing much of this might have been prevented if his pediatrician had done a simple blood sugar check?

After we started to ease into our new life, we had come to find out that Liam's (now former) pediatrician did not even have a glucometer in the office. They were completely ill-equipped to deal with a diabetic child. Our entire crisis could have been avoided if they had a $20 meter. A frustrating thought, one that we still struggle with. This is one of the driving forces for me in T1D advocacy. No doctor should ever be in a situation where they can't test a child's BG right then and there.

You had an idea for a watchstrap to help fundraise for diabetes… can you share more about that?

In April 2016, just after the one-year anniversary of Liam's diagnosis, I launched the #TypeNone watchstrap to raise money and awareness for T1D, with all of the profits going to JDRF and Beyond Type 1.  I was able to fill more than 300 orders and donate over $4,000 to these groups, and today hundreds of people from all over the world are wearing the strap on their watches showing off the diabetes colors.

The idea for the watchstrap came from a friend who did the same thing to raise money for breast cancer research after his wife was diagnosed. He released his strap right after Liam was diagnosed, so I had an immediate connection with the idea and started to put the wheels in motion for my project. I discussed my idea with him and the vendor he sold the strap through. Ultimately, I went on my own and designed the strap, sourced the manufacturer, then sold and fulfilled all the orders.

Wow, that’s pretty cool! Have you done any other advocacy relating to diabetes awareness?

The other action that both my wife and I took recently was to get a tattoo of the Beyond Type 1 logo. While some may view that as a little extreme, I look at it from the point of view that my son doesn't have a choice when it comes to wearing his CGM on his arm, so I will do the same and wear this logo in the same place.

I've had many conversations with people who ask what it means, and every one of those conversations leaves one more person aware of T1D, the signs and symptoms, and that we can live beyond it.

What gets you excited as to diabetes innovations?

I'm excited about encapsulation. All of the new technology is great and will certainly lead to better management and hopefully less stress in dealing with T1D. However, encapsulation is a functional cure, not an actual cure. Still, it's a legitimate possibility for T1Ds to live a normal life, just like everyone else.

What do you think are the biggest challenges right now in diabetes innovation?

I'm not a scientist, so I can only speculate. From my point of view, it seems as if integrating the technology, and the funds needed to advance it, are the biggest challenges. The tech is really starting to catch up to where we want to be -- starting to improve exponentially so, much like desktop computers and the Internet. Things are going to start moving very fast in the next 5 years or so!

If you were able to solve one or two specific healthcare problems in diabetes, what would you suggest?

Ensure every doctor is required to keep a glucometer and strips in their office and, remove the red tape associated with obtaining pumps and CGMs. 

There are at least two DKA awareness campaigns aimed at making blood sugar checks a standard requirement for pediatricians… what do you think of targeting doctors directly?

Anything that can be done to avoid situations like ours should be done. The Diabetes Community puts forth so much effort to educate the general public of the warning signs and symptoms of T1D. The Medical Community shouldn't need the same effort. It is their job to be the advocates of their patients. They need to be held accountable. To quote the resident endocrinologist, when we were in the hospital with Liam, after he heard our story about the pediatrician not having a glucometer, "That's appalling."

What are you looking forward to at the DiabetesMine Innovation Summit?

Being able to have one-on-one conversations with the people driving these innovations forward and hopefully giving them meaningful feedback. Being able to share our experience so that others might be able to avoid it. Learning new ideas, methods, and strategies to dealing with and managing T1D. Talking to people who understand the stress and struggle that comes with the daily management of T1D. I can't wait.

 

Thanks, Seth. We're excited to include you in the Innovation Summit and the lively discussions that will surely take place there!

Disclaimer: Content created by the Diabetes Mine team. For more details click here.

Disclaimer

This content is created for Diabetes Mine, a consumer health blog focused on the diabetes community. The content is not medically reviewed and doesn't adhere to Healthline's editorial guidelines. For more information about Healthline's partnership with Diabetes Mine, please click here.