Press

“Who lives, who dies, who tells your story?”

That line from the musical “Hamilton” inspires me to keep telling the story of my daughter Mallory. She died two years ago Friday at the age of 25, two months after receiving a transplant to replace both of her lungs, which had been ravaged by cystic fibrosis and an infection that no drugs could eradicate.

The researcher couldn’t get Mallory Smith’s story out of her mind. Smith was a 25-year-old cystic fibrosis patient, and she was near death at a Pittsburgh hospital, her lungs overwhelmed by bacteria. All antibiotics had failed. As a last resort, her father suggested an experimental treatment known as phage therapy.

The age of 25, for most people, is the beginning of life, not the end. But, as anyone will tell you, Mallory Smith, class of 2010, was not most people.

Salt had always been a fundamental part of Mallory Smith’s life. Like all babies born with cystic fibrosis, Mallory had inherited two defective copies of a gene responsible for balancing the salt and water in sweat. The disease caused a thick mucus to form in her lungs, trapping bacteria and triggering infections, and leaving her skin a little salty.

Even for the most elite of bacteria-killers, these superbugs were a challenge.

They’d delayed Mallory Smith from getting a lung transplant, and when she’d finally had the surgery, the bacteria quickly migrated into her new lungs. They shrugged off cocktail after cocktail of antibiotics

Frank Buckley interviews author and publicist Diane Shader Smith, who’s daughter, Mallory, was diagnosed with cystic fibrosis and authored the posthumously published book “Salt in My Soul: An Unfinished Life.”

The compelling story of Mallory Smith, who lived with cystic fibrosis for 25 years and died in 2017 after a 10-year battle with antibiotic-resistant infections, set the stage for a discussion on Capitol Hill on May 18 about the growing impact of resistance, the broken economic model for antibiotic development, the need to use antibiotics wisely and how legislation like the PASTEUR Act can help.

A new film called Salt in My Soul was recently released, with one of the expressed goals being to raise funds for phage research and antibiotic resistance.

A new documentary called “Salt in My Soul” is out now and it tells the story of Mallory Smith, a young woman who secretly documented her 25 year struggle with chronic illness before ultimately losing her battle with disease. Joining us to discuss is Diane Shader-Smith, writer, speaker and mother of Mallory.

Salt in My Soul documents the life of Mallory Smith, who is diagnosed with cystic fibrosis at age three. Throughout her 25 years of life, Mallory journaled every step of her experience with cystic fibrosis, right up until her last breath, resulting in the memoir on which this documentary is based.