Fighting for Families with Type 1 Diabetes: The Donahue Journey
- Joe Donahue
- Mar 10
- 5 min read
Type 1 Diabetes (T1D) is a relentless, life-threatening disease that never takes a break. It does not care if you are tired, broke, or emotionally drained. It does not wait for a better time to throw your life into chaos. It just shows up, uninvited, and never leaves.
I know this because it showed up at our front door in 2017 when our oldest daughter, Sofia, was diagnosed at just nine years old.
And then, three years later, it came for Naomi.
And six months after that, that miserable no-good sucker came for Violet, too.
This disease has stolen sleep, time, money, and peace from my family. It has reshaped our reality in ways I never expected, and in ways I never wanted. But it is here, and so we fight.
We Fight Because We Took It Personally...
I was having lunch with two local pastor friends from Fort Smith, Arkansas. Kristy called me on the phone and I remember the exact moment our world changed forever.
Sofia had been drinking water constantly, eating everything in sight, and still losing weight. She was pale, exhausted, and had started falling down at recess. Something was wrong. My wife, Kristy, took her to the pediatrician, and within minutes, we were told: “Drive straight to the children’s hospital. Do not stop. She’s in diabetic ketoacidosis.”
That drive was the most terrifying of my life. Sofia sat in the back seat, clutching my hand, crying, "I don't want to die." She kept drifting off, and I was doing everything I could to keep her awake, to keep her here.
When we got to the hospital, doctors rushed her into the ER. They held her down to insert IVs, and I laid on the cold tile floor next to her, holding her hand, whispering, "You're going to be okay. You're going to be okay."
My delicate, innocent, beautiful little flower just had her childhood robbed from her.
What followed was a blur of finger sticks, insulin injections, blood sugar crashes, over corrections, counting carbs, needles, needles, needles, needles, and finger sticks. Every two hours, we woke her up, to stick those tiny precious fingers until they bled to test her blood sugar level - then if needed, another injection.
I watched my nine-year-old daughter get crushed under the weight of a disease that never gives you a break. The anxiety of managing T1D took a toll on her mental health. Now at 17, she has fought her way back, but it has not been easy. T1D is not just a physical disease. It wrecks mental health, too.
And just when we started to find a rhythm with Sofia’s care, her sister Naomi was diagnosed in 2020. We caught it early, and avoided DKA.
And then their sister Violet in 2021. (Again, caught it early and avoided DKA.)
Four daughters. Three diagnoses.
I do not have the words to describe what it is like to watch your kids go through this. To watch their childhood slip away as they stick needles into their bodies, attach pumps to their stomachs, and embed CGM's under their skin, and see them break down in frustration because they just want to feel normal, just want one meal where they do not have to count carbs, feel the sting of the insulin pump, or think about insulin. No matter how hard you fight, no matter how many good days you manage to string together, this disease does not go away.
(Sofia, Naomi, and Violet the very first time they wore a Dexcom, Omnipod Insulin Pump, or both.)
But the financial side? It is brutal.
Even with good insurance, we spend over $1,200 a month on medical care. If we did not have insurance, it would cost over $100,000 a year. No parent should ever have to stare at a bottle of insulin and wonder if they can afford to refill it.
This is why I am telling our story today. This is a chronic disease that is unrelenting, it is expensive, and it is exhausting—but one of the ways I might be able to bring relief to my daughters and to others, is by telling our story and making a few "Big Asks" of the US Government.
The Big Asks: What We Need from Congress
These policy solutions can save lives and make T1D care more affordable and accessible.
BIG ASK #1: Ensure Affordable Insulin & Diabetes Technology
Expand the $35/month insulin cap beyond Medicare to include private insurance and the uninsured.
Require patient choice insurance coverage for Continuous Glucose Monitors (CGMs) and Automated Insulin Delivery (AID) systems as standard diabetes care.
End the rebate system that inflates insulin prices and drives up out-of-pocket costs for families.
➡️ Why? Insulin is not optional—it is lifesaving medication. No one should ration insulin or go bankrupt trying to afford it.
BIG ASK #2: Renew the Special Diabetes Program (SDP)
Pass a multi-year renewal of SDP at $200 million per year before it expires on March 31, 2025.
Ensure continued funding for diabetes research at the National Institutes of Health (NIH).
➡️ Why? The SDP has funded every major breakthrough in T1D research. If Congress does not renew it, progress toward a cure stalls.
BIG ASK #3: Pass the SCREEN for T1D Act
Expand early screening for T1D through a national program to prevent life-threatening complications.
Direct the CDC to launch a public awareness campaign and provide funding for screening access.
➡️ Why? Too many children are diagnosed in diabetic ketoacidosis (DKA)—a preventable crisis. A simple "fingerstick" with a glucose meter in a pediatrician's office should be standard care for children. Stand on the scale, blood pressure cuff, listen to them breathe, and test their blood sugar. Early detection saves lives.
BIG ASK #4: Support Project ACT: Advancing Cell Therapies for a Cure
Increase NIH and FDA funding for cell therapy research and fast-track approval pathways for clinical trials.
Ensure insurance coverage for these potential cures once FDA-approved.
Read More at BreakthroughT1D: https://www.breakthrought1d.org/project-act/
➡️ Why? My daughters could be cured—but only if we invest in research and remove the red tape.
BIG ASK #5: Join the Congressional Diabetes Caucus
Sign on as a member to support bipartisan diabetes research, affordability, and access legislation.
It's free!
➡️ Why? Diabetes is one of the most expensive chronic diseases in America. Congress must prioritize real solutions.
How YOU Can Help: Be our voice, multiplied.
T1D advocacy is stronger when more voices speak up. You can join the fight in several ways:
✅ Find Your Representatives & Cut and Paste our Story and Big Asks - then hit send.
✅ Share Our Story: Spread awareness about what families like ours go through every single day.
✅ Get Involved in Advocacy: Attend BreakthroughT1D Walks, Rides, Galas, and fundraisers.
Thank You for Standing with Us!
Every person who speaks up, donates, or contacts their representative makes a difference. Please email your Senators and Representatives, tag them on social media, and share our story and our Big Asks.
As a parent of a T1D, we stand with you Joe! Our government needs to do MORE to help the T1D Community.