Live every day as if it were your last... Maddy M.
RUMSON, NJ: Dawn Massabni lives with a broken heart. The pain is unbearable. It is the pain that only a bereaved parent knows. It changes everything. Every waking moment Dawn is missing her beautiful, full of life and love, healthy, vivacious 19 year old daughter Madalyn "Maddy" Elizabeth Massabni, who passed in March of 2017. Her sleeping moments are few, and are constantly interrupted by nightmares of her daughter's tragic death. Maddy's death certificate clearly states: Toxic Shock Syndrome (TSS). Something that possibly could have been prevented if the symptoms and warning signs were something people were made aware of and talked about.
Dawn comments, "My daughter died in March of 2017 of toxic shock after using Playtex Sport tampons. We need to all get beyond the stigma and talk about women's health. We need a public service announcement campaign warning our girls about the symptoms of something that can occur when they use a tampon, something that can kill them if they don't seek immediate treatment. Unbelievably, there is a report from the Detroit Free Press dated March 2, 2016 a year before Maddy died, that has the headline; 5 confirmed toxic shock cases in Michigan. In that report four out of the five TSS cases were women using Playtex Sport tampons. HanesBrands/Edgewell Personal Care owns Playtex Sport tampons. I am calling on HanesBrands/Edgewell Personal Care to make changes and make them fast. The health of women and young girls matters. A company making hygiene products for women and young girls, is responsible for communicating clearly any necessary warnings and symptoms. There's a misconception that toxic shock only occurs from a tampon that has been left in for too long. That is just not the case. There are cases of young girls using a tampon for the first time and after a couple hours developing toxic shock. The exterior of the boxes and the inside flap of the box should have easy to read warnings and symptoms in large bold print. Right now there is a small insert with impossible to read small print directing you to a website. There also needs to be warnings on all tampon advertisments, just like cigarettes. Also in public bathrooms there should be warnings on all tampon vending machines. This past Saturday, June 8th was National Tampon Alert Day, established in 1993 by a bereaved mom named Jenny Kilvert whose 15 year old daughter Alice died of TSS. It is the tampon companies that need to step up and take responsibility to alert the public every time anyone sees an ad or picks up a box of tampons."
Dawn is not just talking about these changes. She is currently working with Congressman Chris Smith's office to make changes that will result in raising awareness through education and ensuring that the women's hygiene product companies will provide responsible warnings. Congressman Chris Smith's office comments, “Out of the tragedy and pain of losing her healthy, young daughter, Madalyn "Maddy", to Toxic Shock Syndrome, Dawn Massabni has courageously fought to protect women and educate the public on the dangers of TSS,” said Mary McDermott Noonan, Rep. Chris Smith’s chief of staff, who said Rep Smith is working directly with Dawn to enhance public awareness and notification of the dangers of TSS. “Dawn and Congressman Smith have met with key officials from the U.S. Department of Education and others that oversee the Food and Drug Administration to assess ways in which we can educate our youth and push the FDA to issue more visible warning labels. TSS is preventable and we must do all we can to prevent more tragedies in the future. Dawn’s selfless commitment and leadership is helping to ensure that other women and girls are better informed with the facts and data they need to better protect themselves from the severe—even terminal—illnesses that can result from Toxic Shock Syndrome.”
Maddy's mom Dawn and her brother Georgie are going to make sure that in Maddy's memory, lives are saved, and families are spared the agonizing journey of child and sibling loss. Dawn Massabni comments, "We need to save lives and we will do it for Maddy, because that is what Maddy would want us to do. We are so thankful to Congressman Chris Smith and his office for showing us true care and concern and initiating the navigation process of making a positive change in women's healthcare. Young girls should be learning about TSS in their health classes right along with talking about women's hygiene products. Every young girl should learn about toxic shock symptoms during their younger years in school, and be reminded again and again. When entering college young women many living outside of the home for the first time should receive information covering the symptoms of TSS. So many college girls are out late with friends, at parties....they need to know even if they change their tampons as directed, they can still develop toxic shock and they need to be aware of the symptoms."
In March of 2017, Maddy was a second semester freshman at Lynn University in Boca Raton, Florida. She traveled home to Rumson, NJ to share her 19th birthday with her mom. Dawn comments, "The three of us are very close and have traditions of always celebrating birthdays and holidays together. My son Georgie is three years older than Maddy and is a student at the University of Tampa. Maddy shared her spring break with him at Tampa, where Georgie was playing lacrosse. After a fun time with Georgie, Maddy then came home to share time with me for her birthday. On March 27th, Maddy's 19th birthday, she was not feeling herself. She had symptoms of a stomach bug, but she still wanted to go out. I said that it wasn't fair she didn't feel well when we went out so we would repeat the celebration as soon as she felt better...Maddy went to sleep the following night still not feeling great and they decided if she wasn't feeling better by the morning they would go to the doctor. The next morning Dawn went to wake Maddy and she was in a semiconscious state. Maddy did not make it. She passed in her mother's arms in her home that morning. Dawn says, "I had to call my son at the University of Tampa and tell him his sister and best friend had passed. It was the hardest phone call I have ever had to make."
The home has lost it's joy, but it is full of love. Love for each other and for someone they miss with every breath, their beautiful Maddy. Maddy's two dogs Charlie and Beau also miss her. Dawn comments, "Maddy used to take them in the car with her, they were always following Maddy and they miss her so much too." Dawn planted a beautiful garden named 'Maddy's Garden,' that grows in the front lawn. It's full of tall flowers in different shades of blue and purple with white rose bushes. There is an angel statue and butterflies... "I feel close to Maddy when I'm out here in her garden. I always feel close to her but I like taking care of this garden for Maddy. Her favorite color is blue and her favorite flower is pink roses. We only planted white Rose bushes and our Maddy showed us she's with us with a pink rose bush popping up out of the blue this spring." Dawn also keeps Maddy's grave site carefully manicured with flowers and decorative items.
Maddy's mom Dawn comments, "Maddy is the light of our lives. Her brother Georgie and I miss her so much that every moment is difficult. Maddy is love, that is the one word to describe her. She brought joy and love to everyone." Dawn's mom comments wiping away the constant stream of tears. Georgie adds, "I miss her so much. We were always hanging out together and our friend groups hung out together too. She was always borrowing my stuff, always looking in my drawers for something of mine to borrow." Georgie shows a picture of Maddy wearing one of his hats. It's the picture that Georgie and his mom chose to use for the print materials for the raising awareness campaign for toxic shock. He understands the deep pain of sibling loss, the survivor guilt, "I begged the doctors to take my organs to save her. I would give my life today for my sister to live." Both Georgie and his mom had tatoos made of a saying that Maddy frequently would say, "Live every day as if it were your last."
Dawn continues, "She had a contagious laugh, she had her own style, was compassionate and supportive she would tell her friends, 'You are perfect the way you are! You don't need to change a thing.' She was always kind, always helping others. She loved her family above all. She loved her friends and her dogs. In High School she loved being a cheerleader and the boys track manager. She was a model and on the front cover of the magazine Discovery Girls . Georgie adds, "She loved the ocean and was always going to the beach, even in the winter. She was always happy, always up for fun, singing, dancing, ..."
Mom, Dawn Massabni comments, "Toxic shock is something that nobody talks about anymore. It has a stigma. This is a women's healthcare issue that needs to be addressed immediately. We are buying tampons for our young daughters without realizing we are providing them with something that can cause their death. Parents and their daughters need to be warned properly by the tampon manufacturers and every young girl should learn about the symptoms and preventative measures, in their health classes too. Another thing There needs to be warnings on all of the advertisements and the product boxes, just like there are warnings on cigarettes and alcohol warnings. We have dispensers in the bathrooms for tampons, those should have the warnings on the outside of the dispenser just like you see the warning signs in women's bathroom for the dangers of drinking alcohol while pregnant. The tampon manufacturing companies need to take responsibility It needs to start with education; we need to talk about the symptoms of toxic shock. We need to stop treating our girls unfairly. Even in sports, my son would have so much protective grear for lacrosse and Maddy didn't even have to wear a helmet. It doesn't make sense, it's like the safety and welfare of girls doesn't matter to some organizations."
There are not that many people stronger than a mother on a mission for her child and Dawn is no exception to that. She carries her boulder of pain, moving constantly forward in her mission. She has been traveling to other states to speak about toxic shock syndrome and has had two reports back to her that her speech caused early identification of two recent cases of TSS. Last month she was a guest speaker for a Sepsis Foundation Gala, 'Begin Again Foundation', and spoke in front of an audience of over 300 people. She comments, "I was able to tell 300 people Maddy's story and share my urgent call for education, symptom awareness and the need for warnings on all advertising, packaging and public restroom tampon vending machines. We do not have time to wait." Dawn spoke at the University of Tampa to a small group of 30 college girls. When asked out of the 30 how many knew what toxic shock was only 3 raised their hands. When asked if any of the girls in the room have ever read the very small print warning insert inside of the tampon boxes, not one girl raised her hand. They all agreed that they throw it out without reading it. Dawn also spoke to students at Lynn University, where Maddy was attending college as a freshman when she passed. Dawn spoke about the symptoms of toxic shock and Maddy's story, and now the Lynn University is hosting informational workshops for TSS.
Maddy's mom is starting the conversations everyday, freely talking about TSS, raising awareness and saving lives in memory of their Maddy. In October of 2018 Dawn and Georgie officially formed a non-profit to raise awareness and educate the public about toxic shock syndrome. The nonprofit is called Don't Shock Me. For more information and to make a donation visit dontshockme.org
BE AWARE AND SPREAD THE WORD:
Signs of Toxic Shock
Possible signs and symptoms of toxic shock syndrome include:
- A sudden high fever
- Increased heart rate
- Low blood pressure (hypotension)
- Vomiting or diarrhea
- A rash resembling a sunburn, particularly on your palms and soles
- Sudden chills
- Muscle aches/pains
- Redness of your eyes, mouth and throat
- Peeling of skin on soles of feet or palms of hands
Go to the emergency room immediately if you are experiencing any of these symptoms and you've recently used tampons or if you have a skin or wound infection. Time is of the essence.
The Massabni family is also dealing with not being able to get into Maddy's cell phone or Facebook site where her most precious photos and videos were kept. They are hitting a wall with Apple to unlock the phone, and Facebook to activate the site that someone unbeknownst to them had memorialized, so Facebook also locked it...
Remember a bereaved parent, sibling... loves nothing more than to know that you remember their loved one. Don't be afraid that you will upset them by mentioning the child's name and reminding them. They are always thinking about their child/loved one, and want nothing more than to talk about him or her. Make the phone call, send the text... if you are thinking about them let them know. You can email Dawn Massabni directly at email@example.com