There are before-and-after moments in life, then there are the words in between Words that can be felt to the depth of your core and carried with you for the rest of your life. Words that represent the moment everything changed. 587. January 20, 2020. Before the world changed, our world changed forever.
Our five-year-old daughter, Addy had not been herself. She was irritable, cried for sugar, was urinating frequently. I am a physician. She had an amazing pediatrician. We had done an extensive workup. Everything was normal, including a fasting blood sugar. This day was different. She was disoriented. She had wet the bed twice. My soul what my mind wasn’t ready to accept. I had urine dip strips at home. Hesitantly, I dipped the urine of my five-year-old daughter while she sat whining on my lap. Large ketones. Large glucose. My heart sank. The confirmation was there in front of me, the thing I desperately did not want to believe. Surely my strips were wrong. A visit to our pediatrician revealed they weren’t. A quick fingerstick confirmed my fear. 587. As a physician, I knew exactly what that number meant. As a mother, I had no idea what it would mean for the rest of our lives. My seven-year-old daughter watched, wide-eyed, as I literally collapsed to the floor. My sweet five-year-old, Addy, sat there holding her tiny finger, feeling the pulsation and burn of what would become the first of thousands upon thousands of finger pokes.
I had seen what this disease could do. I had seen teenagers come in and out of the hospital in DKA battling the relentless demands of managing T1D; adult without toes or feet, on dialysis, or suffering their first stroke. Patients ration insulin because they could not afford enough to keep themselves safely out of DKA. I knew the devastating complications. But none of that knowledge prepared me to look at my innocent little girl and realize that her world had just changed forever or for her words that still play through my head when I bring her a juice in the middle of the night or chase her off the soccer field to treat a low she wants to ignore.
“Mom, when will I be better?” After Addy’s diagnosis, we spent four days in outpatient diabetes education. We learned how to count carbohydrates, administer insulin, read CGM data, respond to highs and lows, and how to keep our daughter alive. But somewhere along the way, I realized I had failed to explain the ugliest reality of this disease. This was forever. As we pulled away from our last diabetes education appointment, I heard her small voice from the backseat. “Mom, when will the shots work so I can stop taking them?” “When will I be better?” I will never forget those words. Of course, my five-year-old daughter didn’t understand what chronic meant. She didn’t understand that every dose would eventually wear off. She didn’t understand that her life would now be tethered to injections, blood sugar readings, alarms and beeps in the middle of the night. That every carbohydrate would need to be counted, every activity would need to be considered. And I didn’t know how to tell her.
Four antibodies. Almost five years passed. We learned how to live with T1D. We learned the alarms, numbers, calculations, sleepless nights, constant vigilance. We learned to celebrate good days and survive the hard ones. And then came another phone call. “Sarah?” “Yes, I’m Sarah.” “This is the Barbara Davis Center with the ASK Program. How are you tonight?” My heart raced. I felt ill. I knew what this call meant. “Are you the parent of Emma Graham?” I had always been so proud to answer yes to that question. In that moment, I wanted to scream, no. “No, you have the wrong number, the wrong child.” “I’d like to inform you that we have Emma
Graham’s results. Can you verify that you’re her mother?” My hands were shaking. My eyes filled with tears. “Yes. I am her mom.” “I just wanted to let you know that we have the screening results, and Emma tested positive for four antibodies to Type 1 diabetes.”
The words became a blur. Everything around me became background noise. All I could hear were those words, four antibodies. There had been no family history beyond Addy. No symptoms. We had simply participated in a screening program. We wanted to check the box. We wanted to be responsible. We wanted to make sure Emma didn’t have any chance of developing the horrific disease her sister had been living with for almost five years. The woman on the phone continued talking. She asked if I had questions. I didn’t need more information. I had only questions that no one could answer. Why? Why my other daughter? Why two children? Why our family? And why, in 2025, more than 100 years after insulin became a life-sustaining treatment did we still not have a cure?
Our daughters are not their diagnosis. They are daughters, sisters, athletes, friends, and students. They live full, beautiful lives and on the outside appear normal to the world, but underneath all of it is something most people never see. T1D is there. Every meal, practice, sleepover, school day, vacation, illness, night. There is no day off. There is no “I’ll deal with it tomorrow.” There is only the next blood sugar. The next dose of insulin. The next alarm. The next decision. We are incredibly fortunate to have insulin and technology. Insulin is not a cure, it is life support that must be managed. Our story is not unique. There are thousands of children and families living this reality. Parents waking in the middle of the night. Children learning to calculate carbohydrates before they are old enough to understand why. Teenagers trying to live normally while managing a disease that never stops. Adults facing the long-term complications of a disease they never asked for. And families who cannot always afford the insulin and supplies that keep their loved ones alive.
Our daughters and these families deserve a future where T1D is something they remember—not something that dictates their every day. They deserve to hear the words my five-year-old once asked me for: “You don’t need the shots anymore. You’re better.” We are asking you to join us in making that future possible. Your support can help fund research, expand awareness, support families living with T1D, and move us closer to the day when insulin is no longer the best answer we have. For Emma, Addy and for every family still waiting for the words that will change everything: “There is a cure.”
Join us this Sunday, October 11th, at Great Lawn Park for the Breakthrough T1D Walk.
You can be part of the road to “There is a cure” with us. Walk alongside this family and hundreds of others who are standing up for everyone living with T1D. Every step, every dollar raised, and every person who shows up brings us closer to the day when families like theirs hear the words they are waiting for.
Register to join us – Register – BreakthroughT1D Walk
- In person at Great Lawn Park
- Virtually, from wherever you are
- With a team of friends, family, or coworkers
- On your own, because one person can make a difference