The Search for a Cure: One Family’s Fight with Type 1 Diabetes

By MARK and STACIE OSHIMA

Evan, our 11-year-old son, has Type 1 diabetes (T1D). T1D is an autoimmune disease in which a person’s pancreas stops producing insulin – a hormone essential for turning food into energy. It strikes both children and adults and is unrelated to diet and lifestyle.

Evan will be participating in this year’s JDRF One Walk on Nov. 3 at Anaheim Stadium to help raise funds for a cure for T1D. Our dear friend Kristi Savacool has pledged to donate an additional $5,000 if Evan’s JDRF One Walk team, Evan’s Evangers, raises $15,000 for this year’s One Walk.

We would love for you to walk with us or donate to fund life-changing research to end this disease: http://bit.ly/EvanJDRF2019. Thank you for your incredible support!

Evan was diagnosed with T1D on Feb. 13, 2014, when he was 6 years old. It’s 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 Orange County). He had already called the hospital 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 experiencing 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 callus 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 said wistfully (as wistful as a 6 year-old could be, at least), “You know, I’m gonna really miss this place.”

That was 5½ years ago. Managing Evan’s diabetes has changed in many ways since then. He now wears a Tandem t:slim X2 “smart” insulin pump and continuous glucose monitor (CGM); these devices not only dose insulin but also shut off the delivery of insulin if his glucose levels drop too low. 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 eyesight, neuropathy, high blood pressure, kidney and heart disease, skin infections, and death.

And multiple times a week, we’re 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 advances in medical devices and treatments, there is still no cure for Type 1 diabetes. Evan and 1.2 million other Americans still suffer from this terrible disease.

That’s why we are participating in the JDRF One Walk on Nov. 3. We invite you to walk with Evan’s team, Evan’s Evangers, or donate to help JDRF continue to fund life-changing Type 1 diabetes research and create a world without T1D. We want there to come a day when Evan can say that he used to have T1D. Please help us turn Type One into Type None. Thank you.