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The Journals are the premier publications for high-quality, hyperlocal news and advertising in Monmouth County, New Jersey

Mar 29, 2021

Rumson Mom Fights to Honor Daughter, Protect Others from Deadly Consequences of mTSS

By Shanna O'Mara

Madalyn “Maddy” Massabni was a 19-year-old freshman at Lynn University in Florida. Before her birthday in March 2017, she flew to Tampa to visit her older brother, Georgie, then traveled home to Rumson to spend time with her mother, Dawn. Dawn said the three had been “inseparable” and admitted Maddy was always the one to light up a room with her confidence and welcoming nature. She and her mom went out to dinner to celebrate. The next night, Maddy went to bed early after feeling ill. Her mom said they’d go to the doctor in the morning if she still felt sick. Dawn woke up her daughter the next day, but Maddy was barely responding. Paramedics rushed to the house, but it was too late. Maddy suffered a heart attack and died in her mother’s arms.

“It haunts me every day,” Dawn said. “I can’t eat. I never sleep. There were just 36 hours between the first symptom and her being gone. We thought she had a stomach bug or something.”

Maddy died of menstrual toxic shock syndrome (mTSS), a life-threatening complication which is caused by the use of superabsorbent tampons. Dawn said her daughter had her period that week and had been using Playtex Sport tampons carefully, changing them as often as recommended. Maddy did everything right, did what millions of women do each day, and yet she lost her life just three days after turning 19. 

“My heart is broken,” Dawn cried. “Every day is absolute torture. She was so full of life, had such a huge heart, and I can’t do anything for her anymore. I’m her mom, and I can’t do anything. It gives me some peace of mind knowing we’re going to change things. I’m not going to let another family go through what we do every day.”

Since her daughter’s passing, Dawn has led the fight to amend legislation regarding tampon sales and mTSS education. She has established the “Don’t Shock Me” Maddy Massabni Foundation for Toxic Shock Awareness, met with representatives of the Food and Drug Administration, worked with New Jersey lawmakers, given talks at schools around the country and reached countless people online. She and Senator Declan O’Scanlon, who represents Monmouth County, introduced Madalyn’s Law, which requires school districts to incorporate age-appropriate instruction on menstrual toxic shock syndrome and requires installation of signage in certain women’s rooms to enhance public awareness of mTSS. Dawn said the legislation has not yet been reviewed by the Senate or Assembly. She has also been tirelessly fighting to have politicians pass the Tampon Packaging Law, which would require tampon manufacturers to print a bold warning on the outside of the box, clearly stating the ingredients in the product and symptoms of mTSS as well as print the signs of toxic shock syndrome on the inside of the packaging flap so that women will see this with each use. 

“When you buy tampons, there’s a small insert inside the box with tampon information,” Dawn said. “The print is so small [that] I can’t read it. When I give presentations at schools and ask all the girls, ‘Who throws that insert away as soon as they open the box?’, everyone raises their hand. Women don’t know the symptoms. Many wait to feel better, or they go to the doctor and are told to come back if symptoms persist. By then, they may need to be put on a ventilator. Some lose limbs to amputation. Many don’t make it.” 

Days after Maddy’s passing, Dawn said she was sitting outside, silently begging her daughter to give her a sign to let her know she was safe and happy. A yellow butterfly floated past – graceful, beautiful, and carefree, just like Maddy. Since then, the butterfly has become a symbol for Dawn, a way to feel connected to her daughter. It is that symbol that serves as the inspiration behind an upcoming fundraiser she planned with Red Bank-based artist Jordan G. Robinson. Robinson, whose younger sister went to school with Maddy, described her as “a bright light.”

“They went to Deane Porter and Forrestdale School together,” Robinson said. “I remember taking them to Sea Bright Public Beach, and Maddy was twirling around in the gazebo. She was so happy. She had some rare quality, not the typical childhood glow – it was something else. She left such an impact on me.”

Robinson currently serves as the PR chair for Don’t Shock Me, and together she and Dawn will host Butterflies for Maddy on Sunday, May 23. The fashion show fundraiser will honor Maddy, who was studying fashion in college while raising funds and awareness for menstrual toxic shock syndrome. The ultimate goal, Dawn said, is protecting others from the pain she has felt each day since losing her daughter.

“[Maddy] is my strength and courage,” she said. “If I gave up, she’d be so upset with me. If she had made it through, she would make sure no one else died of this. I have to fight for her now. No one hurts my kids and gets away with it.”

To learn more about Maddy, the nonprofit established in her honor, mTSS, a petition for Madalyn’s Law, the upcoming fundraiser and to watch The Documentary, visit DontShockMe.org or email dontshockme19@gmail.com.