From Crisis to Clarity: A Mother’s Fight for Her Children—and Yours

May is Cystic Fibrosis Awareness Month

Fifteen years ago, everything changed.

After years of being dismissed by doctors, both of my children—then just 10 and 14—were diagnosed with cystic fibrosis (CF), a life-shortening genetic disease that affects the lungs, digestive system, and more. Their diagnosis came late, and there was no time to grieve. No time to process. No time to pause. We were thrown immediately into a full-speed Grand Prix of hospital stays, medications, emergencies, explosions, crashes—and, against all odds, some of the greatest wins of our lives.

We became ferocious consumers of the medical system. Not passive patients, but active, informed participants in every decision, every treatment, every battle. Navigating that system as a family—especially one with two chronically ill children—is a full-time job, one that demands every ounce of strength, patience, and advocacy. We learned to make it work for us, even when it felt impossible. We still do.

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Then came COVID.

As a “high-risk” family, we braced for impact. But instead of protection, we felt abandonment. So much energy was poured into controlling the healthy population—with minimal benefit, even to those of us they claimed to be doing it for. We were told to stay silent, stay home, and be grateful.

But the truth? We were forgotten

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It was during this time that I discovered voices who finally made sense: RFK Jr., Dr. Jay Bhattacharya, Dr. Marty Makary. People who spoke about medical freedom, patient-centered care, and the unseen damage of public health decisions that didn’t actually protect the most vulnerable. At a time when we felt voiceless, their courage reminded me that we were not crazy. We were not alone.

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Then I heard Robert F. Kennedy Jr. formally announce his candidacy for President.

He spoke of our children—the “canaries in the coal mine.” He named what no one else dared to say: that half of America’s children are now living with chronic illness, developmental delays, or conditions that drastically affect their quality of life.

For me, that speech was not just powerful—it was awakening.

I had been so far underwater, so consumed by survival, I hadn’t realized that the horizon I was seeing filled with illness was actually our national landscape.

That moment became a turning point.

I joined the campaign. I offered my time, my voice, my skills. I found others like me—parents, advocates, professionals—each carrying a story, a heartbreak, and a fire to change things. We built something powerful together.

And now, this is a full-circle moment.

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Because May is Cystic Fibrosis Awareness Month.

And this mission started at home.

Our son nearly died at 17 after losing his ability to eat by mouth for over a year due to chronic pancreatitis—a complication of CF. He was wasting away. We were out of options. So, with enormous courage and faith, he underwent a life-saving total pancreatectomy with auto-islet transplant (TP-IAT) at the University of Minnesota. It was a rare, high-risk surgery—but it gave him a second chance at life.

Although we considered several programs, including Dr. Marty Makary’s elite surgical team at Johns Hopkins University, we ultimately chose the University of Minnesota—the institution where the TP-IAT procedure was pioneered. Their comprehensive pediatric program and deep experience in childhood pancreatitis gave us the confidence that this was the best place for our son.

Then came our next fight: access to a drug that could treat the root cause of CF in both our children.

That breakthrough came in the form of Trikafta, a modulator therapy that wasn’t yet approved for their specific CF mutations. In 2018, we enrolled both of our children in a rare mutation study at Cleveland Clinic—research funded by the Cystic Fibrosis Foundation. That study helped open the door for FDA approval. And in February 2021, they both began taking their first dose of Trikafta after it was approved for their unique genetic profiles.

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Since that first pill, our lives have changed in ways we only dreamed of.

Our son—who had been averaging four extended hospitalizations per year and had lung function as low as 42%—has not been hospitalized once since starting Trikafta. His lung function is now at 87%. He said goodbye to his feeding tube and to the port that had been in his chest for ten years.

Our daughter Emily—who had averaged one hospitalization a year—has also experienced zero hospitalizations since starting treatment. Her health has remained stable, allowing her to live fully and pursue her career with strength and independence.

Most recently, she began treatment with Alyftrek, a newly approved CFTR modulator developed for rare mutations—another direct result of years of CFF-funded research and advocacy.

There are over 2,000 known CFTR mutations, and therapies like these are mutation-specific. This is the power of precision medicine—and of relentless, targeted investment in hope.

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But none of this happened by chance.

These wins—these miracles—happened because of the Cystic Fibrosis Foundation and, more importantly, its donors.

People like you.
People who gave $25, $100, $1,000—not knowing who they were helping, but believing someone mattered enough to fight for.

That generosity has given our family time, health, and hope.

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That’s why tomorrow, May 17th, we walk.

We’ll be on the Point Pleasant Boardwalk in New Jersey, just like we have every year since diagnosis. This walk isn’t just tradition. It’s testimony. It’s our fight. It’s our thank you. And it’s our hope.

If you can join us locally, we’d love to see you. If you can’t, we invite you to walk virtually—around your neighborhood, on your treadmill, or simply alongside us in spirit.

And if you can give, please know this: it matters more than you’ll ever know.

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The Cystic Fibrosis Foundation didn’t begin with billionaires or institutions.
It began at a kitchen table in 1955, when a small group of parents refused to accept a death sentence for their children. Many of them moms, like myself. We believe in our children’s and human potential.

They organized bake sales, wrote letters, made phone calls, and built one of the most impactful and fiscally responsible nonprofits in medical history. One that is now helping other diseases, like COPD, EPI, asthma…even COVID through their findings, I am proud to follow in their footsteps for cystic fibrosis and MAHA.

That legacy continues.
And today, you can be part of it.

[Donate Here] https://fundraise.cff.org/PointPleasantBeachNJ2025/TeamMAHA
Walk with us. Give if you can. Share if you will.

Together, we are turning the tide and make CF stand for cure found.

With love and grit,
Jacqueline A CF and MAHA Mom