Why We Walk: 2020 Update

By anyone’s standard, this has been quite a year. And while the world continues to focus on a pandemic not to be named, life goes on… for all of you, and all of us. We have had to stop doing a lot of things, but Type 1 Diabetes, unfortunately, takes no breaks.

But through it all we have made the best of it and continue to be positively impacted by the effort of the JDRF and all of you. Let’s start with Covid. Having an immune compromised family member has been a complicated thing this year. Are we in more danger? Are we not? I can’t honestly say we know for sure. But what little we do know is that while Diabetes often appears on the list of “comorbities” that puts a person at greater risk, it is also commonly believed that if you maintain a healthy weight and have controlled blood sugar that a T1D should be in no greater danger than any one else of a severe Covid case. Why am I telling you that? Because we are very fortunate to provide Trey with the most up to date technology that does an AMAZING job of regulating his blood sugar. Better blood sugar = safer from Covid. That’s big! And that technology came directly from research funded by the JDRF.

And this year Trey was fortunate enough to be part of the pediatric study for this technology. The Tandem X2 Control IQ was an amazing experience. You can read more about our experience with it here!

Outside the UVA Center for Diabetes Technology, Trey holding his new Tandem X2 Pump with Control IQ.

Having amazing blood sugar control, that is considerably easier to manage has also allowed us to breath a bit easier as Trey persues the things in life that he loves. He loves the water. He loves kayaking and stand up paddlebaording.

This summer, while we did not see any of his friends, he was able to be a Counselor in Training at Passages Adventure Camp. Sending your kids to work all day on the James River, traversing rapids, going on long river trips and being in the sun can be a bit of a leap of faith. To that, each year we add thousands of dollars of medical equipment, an iPhone (neither of which are waterproof), several infusion sets that have to be taped, tacked and wrapped in place and a variety of low-sugar rescue snacks, glucose and rapid acting glucagon. Our goal is to be prepared for anything. We are so thankful for the technology that enables him to live his best adventure.

Side note – that wrap on his arm – that’s to keep the Dexcom attached to him.

We are also thankful this year, that with the help of the JDRF Advocacy program and thousands of supporters who took the time to write our elected officials, here in Virginia, House Bill 66 passed. This bill effectively limits the monthly copay for insulin to $50. This is huge. The current “retail” value of insulin is over $300 per bottle. Trey uses 2-3 PER MONTH.. Even with insurance (because historically, all insurances covered it differently, we have had a 3 month supplies of insulin cost over $1,000). Our family is thankful we have always been able to pay for insulin, but for many in our community rationing insulin has become a life or death situation. These are truly life changing effort on the part of the JDRF.

And if your wondering about Trey, he continues to exist above his Type 1. Last year he saw his first big concert (Twenty One Pilots), he acted in his first play (Annie Jr), he got his first job (Passages) and got into governor school (BRVGS). He “graduated” 8th grade and this fall he started High School with virtual learning. We are so proud of how hard he works and the young man he is becoming.

Our family is so thankful that all of you have chosen to support Trey and his goal of a cure. And in doing so, support the JDRF! Despite advancements in technology, Type 1 is still a horrible disease. And while our family is fortunate to be able to provide the best technology, many families still live with the rigor of multiple daily injections and finger pricks. The technology is amazing, but what we really need is a cure. We are passionate about the JDRF’s purpose and believe in their cause. Because it is our purpose. And we appreciate all of you for you support.


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s