Madalyn (Maddy) Massabni was home from college to celebrate her birthday in March 2017 when she started experiencing strange symptoms. What seemed like a stomach bug or the flu ended up being toxic shock syndrome, a rare and life-threatening complication of certain types of bacterial infections.
“I let her sleep in a little bit and I went to wake her up and I had trouble,” her mom Dawn of Rumson, New Jersey, tells PEOPLE. “She didn’t recognize me. I was like ‘Maddy, it’s mommy, it’s mommy.’ I got her to sit up, and she wasn’t right,” she said.
Within 36 hours, Maddy had spiraled into delirium and organ failure.
“She had some seizures in my arms and then all of a sudden she just looked at me and closed her eyes. I didn’t understand why. She was so healthy, I didn’t understand what was going on. She just died in my arms,” Dawn says. Maddy was 19.
According to Dr. JoAnn Pinkerton, executive director of The North American Menopause Society, TSS develops from toxins already present in the body. While there is a link between the use of super-absorbency tampons and TSS, Pinkerton explains that it is not caused by the tampons themselves.
TSS is very rare — in 2016 there were just 40 reported cases in the United States, and about half were not related to menstruating women, Dr. Mary Jane Minkin, an ob-gyn from Yale University and member of PEOPLE’s Health Squad, told PEOPLE. But it is often misdiagnosed and underreported.
That’s one of the reasons why Dawn and her son, George, 24, co-founded Don’t Shock Me, a nonprofit dedicated to raising awareness of TSS, in 2018.
“I have nothing left to give to my daughter, and this is what I want to give to her, I want to give to her lives being saved in her honor,” Dawn says. “[Maddy] gave her life… So we do it for her, we do it to save lives.”
Dawn says the year following her daughter’s death was extremely difficult for her — she rarely left her house and was unable to drive. Months later, though, she and George decided to take action to make sure this wouldn’t happen to anyone else. It’s a sentiment that Dawn says her daughter would have supported.
“Knowing the signs and symptoms and being aware — and being able to express them to a doctor to get immediate help — will save your life,” Dawn says, adding that if caught early, an antibiotic can help fight the infection. “This doesn’t have to happen to anyone.”
These days, Dawn travels to various colleges and other groups to educate others about the illness. She is also trying to introduce Madalyn’s Law in New Jersey, which would require TSS education in health classes in grades five and up, as well as the addition of warning posters in bathrooms.
Additionally she is working with congress members and will meet with the FDA in November to discuss adding more warnings to tampon box labels and print ads.
Most recently, the foundation had its first fundraiser, a Halloween party, to raise money for educational materials and travel expenses so the family can continue to share Maddy’s story.
“I don’t want any other family to go through this kind of tragedy that is so preventable, and to suffer and hurt every day like we do,” says Dawn.