Helping Us: A Miracle, A Message, and a Call to Heal Our Nation
The Drug That Saved My Children—and the System That Almost Failed Them
By Jacqueline Capriotti
In 2020, like so many families living with chronic illness, we shut our doors and held our breath—literally and figuratively. We didn’t leave our house for nearly a year. My children, Jon and Emily, both have cystic fibrosis. We were the vulnerable ones. The ones everyone said they were “sacrificing” for. And yet, behind those closed doors, something extraordinary was quietly unfolding.
What happened to us during that time wasn’t just a medical milestone. It was a miracle. It was also a glimpse into what happens when persistence, science, faith, and human connection come together.
This is the story of how my children received a drug that now gives them a future—how I fought to help get that drug approved for their rare mutation—and why, now more than ever, we need to repair the relationship between healers and those who need healing.
We need a nation that can do that together.
A Breakout Room and a Breakthrough
A few years earlier, I found myself in a breakout room during a CF Foundation medical conference. Dr. JP Clancy of Cincinnati Children’s Hospital was leading the discussion. I had come armed with data and hope—determined to advocate for my kids’ rare CF mutation.
He listened. Closely.
“I think your children may qualify for a rare mutation study,” he said. “Call my office Monday.”
I did.
They made it appear simple enough to us—and I’m so grateful for that. Behind the scenes, what followed was a rollercoaster: coordinating between three major hospitals, navigating trial protocols, data sharing, and endless paperwork—all while watching my son’s health rapidly decline.
Then, the news came: it worked.
Not just one—but three novel cellular modulators were submitted to the FDA for approval. Trikafta, the one we ultimately chose, emerged as the best option for Jon and Emily.
In December 2020, Trikafta was approved by the FDA.
In the middle of a global pandemic.
In the middle of our isolation.
In the middle of fear, division, and distrust—came a miracle
.
The Photograph That Says It All
In February 2021, Jon and Emily took their first dose. We took a photo to mark the moment. In it, they’re holding a sign that Emily drew herself with the Cystic Fibrosis Foundation logo and the words: Helping Us.
That wasn’t just a thank you—it was a declaration.
They were thanking the scientists, the clinicians, the researchers, the CF Foundation, the families in early-stage trials, and the many hands that made this breakthrough possible. And so was I.
At the time, Jon’s lung function was plummeting. He would not have qualified for a transplant due to his previous Total Pancreatectomy with Auto-islet cell transplant. He was being hospitalized several times a year, often on weeks of IV antibiotics. Emily was more stable, but living in that constant state of waiting—for the next crisis to hit.
Since that day? Neither of them has been hospitalized.
Jon’s lung function is now between 70–80%.
Emily is thriving.
Jon has had his feeding tube removed after 10 years. His portacath is gone. He no longer needs them.
It’s not perfect—but my God, we’ve come so far.
And I got to be part of getting a drug approved for my children’s specific rare mutation. It is one of the most expensive drugs in the world today because of its complexity—but no cost could match the value of what we received: more time. More breath. More life.
The Bigger Message
There’s something else I want to say. Something we need to talk about.
In a time of profound mistrust and disillusionment with the medical system, many families feel forgotten, dismissed, or harmed. Ours was one of them.
It took 14 years for our son to be diagnosed with cystic fibrosis. Ten years for our daughter. That is not typical for CF, especially with clear symptoms. They were in and out of pediatricians’ and specialists’ offices for years. We raised our concerns over and over again. But no one thought to run the simple test that could have given us an answer—and a better start.
We have experienced disappointment, incompetence, and deep medical trauma. Some of the mistakes made along the way led to devastating side effects and long-term damage—some of which we are still dealing with today. We live with severe medical PTSD. And for a long time, I carried a deep, personal mistrust of the very system I was depending on to save my children’s lives.
And yet—we still need them.
We need the good doctors. The curious ones. The ones who listen. The ones who stay after hours reviewing data, who take the time to call back, who look beyond the textbook.
We had to find a way to reconcile our pain and our gratitude. We had to learn to advocate better, louder, smarter—and more compassionately. We had to show up for others, just as those who came before showed up for us. And we had to celebrate the victories when they came.
Because they do come.
We must stop pitting patients against practitioners. The media—along with those driven by political or self-serving agendas—have sown deep mistrust, doing real damage. And the system itself? It’s developed an immune response of its own—one that often works against both the patient’s well-being and the provider’s ability to truly heal.
We must stop painting healers as enemies and start asking how to give them the tools—and the freedom—to do better.
Because this is not just about cystic fibrosis.
It’s about cancer. It’s about diabetes. It’s about chronic Lyme, autoimmune and metabolic disease, maternal health, medical trauma, and yes—even those who have been medically injured or dismissed entirely.
It’s time to repair the broken relationship between those who need healing and those trained to provide it. Whether they come from traditional medicine, functional care, integrative therapy, nursing, nutrition, or holistic practice—it’s time for all our healers to come together.
We need a national reconciliation between the sick and the system—between those crying out to be heard, and those called to heal.
Because healing is not just a treatment plan. It’s a relationship. And it needs repair.
This Is What Hope Looks Like
This photo isn’t just a family milestone. It’s a symbol. A message. A call to action.
This is what helping us looks like.
This is what partnership looks like.
This is what a miracle looks like.
Let’s build a future where more families get to experience it.
Let’s rebuild the bridge between the vulnerable and the medical system, the hopeful and the discouraged, the patient and the healer.
Because we cannot afford to lose one more breath.
About the Author
Jacqueline Capriotti is a health reform strategist, caregiver, and founder of Health Revolution USA and the Victory Garden Alliance. A former director of outreach for the RFK Jr. presidential campaign, she now advises policymakers and grassroots leaders on chronic illness, regenerative health, sustainable agriculture, and patient-centered reform. Her advocacy spans the cystic fibrosis community, pediatric pancreatitis, maternal health, and the medically injured and dismissed.
👉 If this story moved you, I invite you to subscribe to this Substack. Together, we’re building a space for healing, truth, and bold solutions—led by those who’ve lived it.
Thanks for sharing, powerful! 🙏🙏🙏