Maya’s Story: 
Fighting for Time and Finding a Way

When Maya was born in Colorado in 2001, she arrived blue and breathless—her tiny heart failing while doctors rushed to save her life. At just three days old, she underwent open-heart surgery, clinging to life with the help of a ventilator. Complications soon followed. She developed sepsis and stopped growing. In addition, a blood test returned with a fatal genetic disease: cystic fibrosis (CF). Years later, Maya and her mother Jennifer turned to the Right to Try so they could access a treatment that would save Maya’s life.

For Maya, the diagnosis marked the beginning of a struggle that would consume her childhood. Maya’s body could not break down food. She was vulnerable to bacteria that most children fight off without incident. Doctors predicted Maya would become diabetic. Her liver might fail. Her lungs almost certainly would. In 2001, the median life expectancy for cystic fibrosis patients hovered near 30—even lower when combined with a congenital heart defect. There was no cure. Maya and her mom were told to manage symptoms and hope that science would catch up, but they quickly learned that hope often has gatekeepers.

Jennifer gave up dreams of graduate school and found work in real estate—a career flexible enough to allow her to become Maya’s full-time caregiver. She became Maya’s insurance navigator, dietitian, researcher, and advocate. Together, they chased medical frontiers all over the country, from Colorado to Minnesota, searching for treatments that might buy time and preserve Maya’s lungs. Eventually, Jennifer discovered a doctor whose cystic fibrosis patients lived longer under an unconventional protocol. Maya abandoned hospital-mandated nutritional drinks and adopted anti-inflammatory diets. The pair met with naturopaths, explored alternative medicine, and adjusted their entire lives to keep Maya going.

For a while, it worked.

But when Maya was 16, she contracted a virulent strain of pseudomonas aeruginosa, a kind of bacteria infamous among cystic fibrosis patients for its resistance to conventional antibiotics. Maya tried everything—herbs, oils, and months of Cipro (a type of antibiotic). Eventually, nothing worked. Her lungs and sinuses filled with thick mucus; she grew dizzy, nauseous, and weak. The hospital offered surgery to clear the infection, but Jennifer refused, afraid the procedure would flood Maya’s bloodstream with resistant bacteria and trigger sepsis again.

The infection was winning. That’s when Jennifer did what many in the rare disease community do: she looked beyond the American mainstream for help and demanded the Right to Try.

An article from Prevention magazine offered a lifeline. In Tbilisi, Georgia, researchers had spent a century using bacteriophages: naturally occurring viruses that target specific bacteria. Phage therapy is actively used abroad, but it has been long overlooked in the United States. FDA barriers make clinical trials difficult, and pharmaceutical companies don’t pursue the treatments, as they can rarely patent and thereby profit from the treatment. One dose cost about $90. But in the United States, it was often available only to livestock—rarely to humans. 

Still, Jennifer’s resolve outran the bureaucracy. Through sheer persistence—and thanks to the Right to Try—she found a doctor willing to help get the box of phages into Maya’s hands. For the first time in years, as her daughter inhaled medicine from halfway around the world, Jennifer exhaled with relief.

The phages were not a cure for cystic fibrosis, but the treatment did buy time by allowing Maya’s lung function to return. She regained strength, but she and her mom always stayed vigilant. Whenever a new infection arose, Jennifer and Maya returned to the phages. Each shipment had to clear legal and logistical hurdles, but they pressed forward. They video chatted with doctors halfway across the world in Tbilisi. They tracked bacteria strains in their environment and protected their home from anything that could serve as a bacterial breeding ground. Every day the mother and daughter worked together to keep going, preserving Maya’s lungs long enough for a miracle.

That breakthrough came in December 2019. A new drug, Trikafta, came to market. For Maya, now a teenager, it changed everything. Her lung function soared to 120%—of a healthy person’s. Her insulin dependence vanished. She has not had a lung infection since.

Without phage therapy, Maya likely would not have made it to 2019. The drugs she needed would not have arrived in time, and the damage to her lungs would have been irreversible. Red tape and bureaucracy didn’t stand a chance against a mother and daughter who wouldn’t quit, as a cure existed across the world.

That is why Jennifer has stepped into advocating for patients—and it’s why she supports the Right to Try for Individualized Treatments. Jennifer is now engaged with Colorado’s Prescription Drug Affordability Board and is urging lawmakers to protect access to rare disease therapies like phages.

Their story is a testament to what’s possible when families are given the Right to Try. As Jennifer puts it: “I think everyone should have the right to try medicines if they have a life-threatening disease. It doesn’t hurt anyone else, and a lot of the medicines are not expensive. Most importantly, you need hope. Without hope, there is no reason to keep going.”

Now, Jennifer and Maya are fighting for others to have that same chance by supporting the Right to Try Individualized Treatments. Millions of Americans live under the shadow of rare and degenerative diseases. At the same time, medical science stands on the brink of a revolution. Gene-based treatments now offer patients custom-built solutions to rare and deadly diseases. But despite their potential, these therapies are being delayed by outdated regulations written for a one-size-fits-all era. The science has moved forward. The system hasn’t.

Across the United States, families shouldn’t have to watch loved ones deteriorate while potentially life-changing therapies remain stuck in bureaucratic limbo. Promising treatments—some already proven safe abroad or in early trials, like Maya’s phages—often spend years winding through an approval process. The result is a growing crisis: patients waiting for life-saving therapies that already exist but remain out of reach.

Right to Try is not about desperation—it’s about dignity and the right to fight for your own life. It is a recognition that when traditional medical paths fail, patients should not need permission slips to keep fighting.