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A Mother’s Cry for Change

Menstrual Toxic Shock

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When a woman first finds out that they are going to be a mother there is an immediate bond and many emotions hit all at once. They experience tears of joy, happiness, excitement, and dreams. Every day is pure bliss as you watch your children thrive and grow in so many ways you never dreamed of. They make you extremely proud and your heart is full. A mother loves her child more than words can ever describe. This love is unconditional and will never change under any circumstances. A daughter though is so very special and she will always be your best friend in life. You never fathom that the future will hold any harm, pain or tragedy for you or that all of your dreams for the family you always dreamed of will be whisked away before your own eyes. As a mom, this is the unthinkable, your worst nightmare now your reality.

My daughter Maddy was full of life and the world was her playground. She had a smile that was not only beautiful but as bright as the sunshine. Her laugh was infectious and when she entered a room every one knew Maddy had arrived. She loved her friends and her most favorite place, the beach. My girl was so charismatic, full of life, and an inspiration to all. Swimming, snowboarding, cheering, modeling, horseback riding, long peaceful car rides, and chilling in her room were some of her favorites. Maddy was a free spirit who loved everyone and never judged. She always accepted everyone because as she would say, “they were perfect just the way they are”. Maddy wanted to be a model and was studying fashion at Lynn University in Boca Raton, Florida. She was already on the cover of a magazine. She was naturally beautiful without makeup and no matter what she wore. Her best friend was her brother Georgie. They would always be seen together. They were closer than any two siblings you could ever know. It was a unique and rare bond. Many wanted to know how this came into being because their children always fought. We endured and conquered so much together that we were always there for each other, we were a team. My family was not perfect but it was everything to me. Truly, I thought we were all finally happy and in a great place. Both kids were in college and loving it. Georgie was at the University of Tampa. Maddy was at Lynn University. They stayed close enough so that they could still see each other or hang out. They were happy, and enjoying this chapter of their life.

Maddy was just a freshman and were were going to celebrate her 19th birthday. It was a family tradition that we all be together to celebrate and go out to dinner. First she visited Georgie at his school to spend some birthday time together. Their birthdays were only 3 weeks apart. She had almost a week to spend with him, catch up, and have fun then she would head home. It was the last time they were together and would ever see each other again.

Maddy arrived home and was so excited to see her friends and celebrate her birthday. Birthdays were always a big deal. It was the one special day that was just your own. We had gone out for a wonderful dinner and celebration. At home Maddy started to feel sick to her stomach, vomited, and went to bed. The next day she didn’t feel well due to a slight fever, vomiting, tiredness, and feeling just lousy. We thought it was the stomach bug because both of us had it the year before and all signs resembled exactly that. I told her if she wasn’t better in the morning we would go to the doctor because after 24 hours I always had them checked. She said she wasn’t feeling very good and I reassured her that first thing we would see the doctor. We said our usual “I love you’s” and went to sleep. The next morning I let her sleep in for a bit so she could rest. One rests when they don’t feel well so they can recover. I went to get her up and head to the doctors office for a check up. When I approached to get her ready she could not get up and did not even recognize me. The fear I immediately felt seeing my precious girl this way was terrifying. I called for help but by the time they arrived my best friend and beautiful precious daughter had a seizure and died in my arms at home. All I can remember was crying and screaming “please don’t leave me, I love you” over and over again. I could not understand what just happened. My daughter was strong and healthy. They revived her numerous times, placed her on a ventilator as well as dialysis at the hospital. So much was happening so fast. It was the doctors words “the situation is grave”, that sent me to my knees. Maddy was in a coma and would not recover. Now I was left to make the hardest decision of my life. One I never dreamed I would ever have to. I had to let go and say goodbye to my beautiful, vibrant, and healthy daughter, my baby all over again. Let me start by saying this is the hardest thing you will ever go through in your life – loss of a child changes you forever. Your world ends and will never be the same again.

Now for complete transparency and honesty.

Anger began, when I found out my daughter had died of menstrual Toxic Shock Syndrome (mTSS) from a tampon. I could not comprehend that an every day hygiene product, a tampon poisoned, and killed my daughter. At her service over 700 people came. I hardly remember any of it. What I did know is that my daughter was loved beyond measure. She was going to be terribly missed and they would be a hole in hearts and the world that could never be filled.

I don’t know how I survived the first year. I cried and slept, remained in my home, and disengaged from society altogether. It was after this that my son and I wanted to honor Maddy in a way she would be remembered for her love of life and spirit so it would live on. We were going to be Maddy’s voice and advocates. We started a non-profit foundation called Don’t Shock Me – Maddy Massabni Foundation for Toxic Shock Awareness. Georgie and I knew if Maddy had made it through the horrors of this disease she herself would be the advocate to mTSS. She would be a strong voice and passionate in saving others from this senseless death.

It is with this that we take on this mission for her. We will fight for her and make sure that other families are spared the heartbreak and sadness we feel each day from what we went through and of not having Maddy here in our lives. Every day, the lives of women and girls are threatened by menstrual toxic shock syndrome (mTSS) due to tampon use and lack of education regarding the associated risks, dangers, signs, and symptoms of this serious and preventable illness. We will make sure the world knows what mTSS is and that the health and lives of all women are protected. The guilt of being a mom and not being able to protect your child from this horrific tragedy and her life lost lives within me every single day. If I had only known what mTSS was, its sign and symptoms, and that it resembles the stomach bug. You don’t even question that it could be something so deadly. Each day I fight this and tell my beautiful precious daughter how sorry I am, how much I miss her, how much I love her, all she means to me, and that she is and always will be my world. I will make sure she is never forgotten from what happened to her, what took her life, and what should have never been.

Developing this foundation and website has been bittersweet, as well as a labor of love. Within the website, you’ll find a wealth of information to read, as well as new information as it becomes available. There is a documentary that addresses real issues for women and is filled with important information. The young women in the documentary are Maddy’s dear friends, openly sharing their stories. It is genuine, heartfelt and very emotional. Please take some time to watch it.

I never in my worst nightmares imagined losing my daughter, especially to something so preventable. Something, that if it had been taken care of decades ago by our healthcare, educational, and governmental agencies, Maddy, along with many others, would be here with us today, living out their hopes and dreams. I have experienced many emotions and stages of grief through this tragedy – sadness, hopelessness, fear, loneliness, emptiness, pain, unimaginable heartbreak, depression, and anger. All of these emotions still come and go in waves, and probably will for life. What I like to remember, and will share with you, is that the three of us were extremely close, loved each other dearly, and were always together in some way or another. If you’ve seen any of the pictures on the site, you know this! Whether it was a sporting event, cheerleading, sharing a meal, a fun family night, a day at the beach, going to a concert, visiting colleges, or our yearly vacation together, you will see us together, loving and laughing! In fact, Maddy sends me signs all the time that she is right there by my side:) Even her friends are experiencing this. She is, and always will be, loved & missed immeasurably by everyone who knew her.

Although the laughter may be fewer and far between these days, I realized that I must make a choice to go on and fight! Not only for me and my son, but for my daughter, and all the other girls and women in this world. Sadly, like too many other mothers, I can no longer go on a fun shopping spree, or go for a girls day and get our nails done, or braid her hair, or just be silly and have girl talks with my daughter. I have had to muster up an incredible amount of strength and determination to pursue this fight and change what took Maddy to heaven to become an angel, to not let her die in vain, and to not be forgotten. I made a promise to fight for all of the mTSS victims, to not let them be forgotten, to be their voice, to change women’s health policy, and to save lives. 

We will make the world safer for our daughters, sisters, friends, and wives. Our foundation has been making a difference worldwide from speaking engagements and articles in international publications to working with legislators creating bills that change women’s healthcare. We will not rest until women have been empowered with the necessary, life-saving educational materials to help prevent complications and needless deaths from mTSS.

So here, this is where we begin our journey of hope and change. 

My wish is that after reading this, and viewing this site, you will help us in saving lives and making a difference by sharing our story and mission.   So here, this is where we begin our journey of hope & change. 

As Maddy would say, we do this “So others may live!”  Love you sweetie, always and forever.

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