Our family has participated annually in the JDRF One Walk to help advance research for better treatments and a cure for Type 1 diabetes (T1D) for our 16-year-old son, Evan. JDRF (Juvenile Diabetes Research Foundation) recently went through a name change and is now known as Breakthrough T1D.
Breakthrough T1D is the same organization - just with a name that more fully represents the T1D community and their mission. T1D is not just "juvenile" diabetes. Adults and children alike can get diagnosed with T1D. Breakthrough T1D's mission is to accelerate life-changing breakthroughs to cure, prevent, and treat Type 1 diabetes and its complications. With Breakthrough T1D's help, it's our hope that Evan can one day say he used to have diabetes.
We're excited for this year's Breakthrough T1D Walk (formerly the JDRF One Walk), which will be held on Saturday, Nov. 9, at Angels Stadium. Our Evan's Evangers team will once again be walking to help create a brighter future and support those affected by T1D. We invite you to join Evan's team, join us at the Breakthrough T1D Walk, and consider making a donation to this cause that means so much to our family: http://www2.breakthrought1d.org/goto/evansevangers
Evan's 10-year "Diaversary"
5,551,140 minutes. Ten and a half years. That's how long Evan has been living with Type 1 diabetes. It was the day before Valentine's Day on Feb. 13, 2014, when we learned of this diagnosis that would forever change his life. In honor of his 10-year "diaversary," I wanted to re-share his diagnosis story.
The day Evan was diagnosed is a day we'll never forget. When I picked him up from kindergarten that day, his teacher shared with me that she noticed that he had been using the restroom much more frequently than usual, particularly that week. We talked about how he might have a urinary tract infection, and I made an appointment with his pediatrician that afternoon. I was eager to get him a prescription for his UTI, because our family was leaving the next day for the boys' first ski trip to Mammoth.
The visit to the doctor's office was short. All three boys were with me in the exam room, when the doctor came in with the results from Evan's urine sample. I will never forget what he said as he turned to my kids: "Boys, you are going to go to the lobby and play with my office staff while I talk here with your mom."
Even now, as I type this, I get a sickening feeling in my stomach; if he couldn't tell me in front of the boys, the news must be bad. After the kids left the room, he said, "I'm sorry, but Evan has diabetes." I burst into tears, not fully understanding how life-threatening this diagnosis was, but knowing full well that life for Evan and our family would never be the same.
Much of the rest of the conversation is a blur, but I remember he said that I should call Mark and have him pack an overnight bag and head to the ER at CHOC (Children's Hospital of Orange County). He had already called them and they would be waiting for us to arrive.
We will never forget how our first ski trip turned into a weekend at CHOC. Instead of ski lessons and playing in the snow for the first time, Evan sat through countless finger pricks, insulin injections, and a very restricted hospital diet. Mark and I sat through a crash course in diabetes management at the hospital. They recommended that we buy a food scale and taught us how to count carbs in food. From now on, every meal would be preceded with a math calculation.
They showed us how to test his blood glucose by pricking his fingers; we learned about the importance of rotating fingers to avoid callous build-ups. They taught us how to calculate insulin dosages, draw up insulin in a syringe, and inject him.
As overwhelmed as we were, Evan barely flinched. He was nervous during his first insulin shot, but he shrugged his shoulders afterwards and said, "It's not that bad." And when he was discharged from the hospital, he looked around the hospital hallway and wistfully said (as wistful as a 6-year-old could be, at least), "You know, I'm gonna really miss this place."
Managing Evan's diabetes has changed in many ways since then. He now wears a "smart" insulin pump and continuous glucose monitor (CGM); these devices not only dose insulin but also automatically adjust his insulin dosage when his glucose levels are out of range. His CGM is fairly accurate, greatly reducing the need for multiple finger pricks throughout the day.
While some things have changed, there are many things that remain as difficult as ever. Evan still has to count carbs every time he wants to eat something. He is still dependent on insulin every minute of the day, regardless of whether he is eating or sleeping.
He still needs to monitor his ever-fluctuating blood glucose levels, which are affected by: food (carb type and quantity), caffeine, sports and exercise, hormones and puberty, adrenaline, time of day, sleep, stress, illness, allergies, altitude, environmental temperature - to name a few.
Every day, he still needs to manage and treat his glucose lows and highs, as short- and long-term complications include: seizures, strokes, loss of eye sight, neuropathy, high blood pressure, kidney and heart disease, skin infections, and death.
And multiple times a week, he's awakened in the middle of the night by an alarm that shows that his glucose levels are dangerously too high or too low.
And, despite great advancements in medical devices and treatments, there is still no cure for Type 1 diabetes. Evan and about 2 million other Americans still suffer from this terrible disease. That's why we are participating in the Breakthrough T1D Walk on Nov. 9 at Anaheim Stadium. We invite you to walk with Evan's team, Evan's Evangers, or donate to his walk team to help Breakthrough T1D continue to fund life-changing Type 1 diabetes research and create a world without T1D.
Please help us turn Type One into Type None. Thank you!