NMA Advocates in California

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Lisa Benatar

California

M.O.M. of Emily (age 19 years)

Emily Benatar

Lisa’s daughter, Emily, was a smart, fun-loving freshman at Washington University in St. Louis when she lost her life to serogroup B meningococcal disease. She went to the ER complaining of a pain in her chest and stomach. While there, she vomited so much that she needed IV fluids in order to rehydrate, but was released back to her dorm after midnight. That night, her father flew from California to be with her. The next day, he brought her to the student health center because she had a rash that looked like hives on her stomach, legs and arms. The rash was different from the purple rash most often associated with meningococcemia, so she was sent back to her dorm. An unbearable headache and overall numbness sent Emily back to the ER that night where she was diagnosed with bacterial meningitis. She passed away three weeks later.

Emily had been vaccinated, but vaccines available at the time did not cover serogroup B, which Emily had. Lisa is thankful that available vaccines now cover five major strains of the disease, including serogroup B. Today, she educates others about prevention and works to increase awareness of the signs and symptoms of meningitis to help protect other families from this devastating disease.

Melanie Benn

California

T.E.A.M. (survived at age 18 years)

On Christmas Eve when she was 18 years-old, Melanie began to experience flu-like symptoms. When her condition worsened, she was rushed to the emergency room where she was diagnosed with meningococcemia. After a one-year battle with the disease, amputations of her arms and legs, and a kidney transplant, Melanie survived and went on to achieve great things, including earning a Master’s degree in social work from UCLA and winning medals for swimming at the 2000 and 2004 U.S. Paralympics.

Jan Connon

California

M.O.M. of Jered (age 18 years)

Jered Connon

Jan Connon’s 18-year-old son, Jered, died in November 2002, from a deadly bacterial infection called meningococcal disease. Jered, a freshman in college, was visiting home for the weekend when he began experiencing flu-like symptoms and developed a purple rash that quickly spread across his body. As Jered’s condition continued to decline, he was rushed to the hospital where he was diagnosed with meningococcal disease. Sadly, Jered passed away only 27 hours after exhibiting his first symptoms. Unaware that adolescents and young adults are at increased risk for the disease, it wasn’t until after Jered’s death that Jan learned there was a vaccine available that could have potentially saved her son’s life.

Karen Crespo

California

T.E.A.M. member (survived at age 28 years)

Karen, a nurse at a Los Angeles hospital, was alone in her apartment when she started feeling sick. At first she assumed she had the flu, but when her feet became numb she knew something more was wrong. By the time she was admitted to the emergency room she could no longer walk. Karen was diagnosed with meningococcemia and spent the next 15 days in a coma and another five months in the intensive care unit. She survived two heart attacks, a blood clot in her brain as well as kidney and respiratory failure. As a result of the infection, Karen underwent amputation of her arms and legs and still has other long-term complications, including hearing loss.

In September 2014, Karen became the first quadruple-amputee to walk the runway at New York Fashion Week. She is dedicated to promoting awareness of meningococcal disease and its prevention.

Jonathan Deguzman

California

T.E.A.M. member (survived at age 22 years)

In May 2005, Jonathan Deguzman’s world was forever changed when a dangerous and potentially fatal, yet potentially vaccine-preventable bacterial infection, called meningococcal disease or meningitis, nearly took his life.

One afternoon, Jonathan began experiencing chills and figured he had the flu, so he decided to lie down in hopes that getting some rest would help him feel better. From that moment, all he can remember is being woken up by his mother, who had noticed a purplish-black rash on his hands; a common symptom of meningococcal disease. As Jonathan fluctuated in and out of consciousness, his parents rushed him to the hospital.

Jonathan awoke 12 days later from his coma to find that, in order to save his life, doctors were forced to amputate his fingers and both feet as the infection had caused gangrene in his limbs. An avid dancer, Jonathan was faced with the harsh reality that he may never be able to dance again. Unfortunately, it wasn’t until after he became sick that he and his parents learned there was a vaccine available that could have potentially prevented him from contracting the disease.

Despite a long recovery and the obstacles he faced as a result of contracting meningococcal disease, Jonathan has continued to engage in the activities he loves most, especially dancing. He is a college student, double majoring in psychology and nursing, and spends much of his free time working with the National Meningitis Association to educate others about the dangers of meningococcal disease and the importance of prevention.

Tracey Dubay

California

M.O.M. of Will (survived at age 17 years)

In 2016, Tracy’s son Will was a high school senior and star soccer player when he thought he was coming down with the flu. Sometime later, Tracy noticed a purple rash forming on Will’s skin. She took his temperature and when she saw he had a fever over 105, she rushed John to the hospital. Doctors were ready to send Will home after a full day of treatment with a saline drip but noticed he had extremely low blood pressure. They instead sent him to the ICU and later diagnosed him with meningococcal disease. He spent a week in the hospital undergoing treatment. Ironically, Will had been planning to get vaccinated against meningococcal disease the following week. Now Will and Tracy work to raise awareness of meningococcal disease and its symptoms.

Suzanne Graham

California

M.O.M. of Samantha (age 22 years)

Samantha Graham

Suzanne’s daughter, Samantha, was a vibrant, outgoing 22-year-old college senior when her life was tragically cut short due to meningococcal disease. One morning in 2002, Samantha called Suzanne complaining of a sore throat, headache and stiff neck. Recognizing the symptoms of meningococcal disease, Suzanne told Samantha to go to the hospital to be tested. Initial blood tests indicated Samantha’s cell count was fine and doctors concluded she was probably suffering from the flu. When getting ready to leave the hospital, Samantha’s sister noticed a rash underneath her arm and immediately called for a doctor. The doctor began treating Samantha for meningococcal disease but sadly, Samantha passed away six days later.

Clare Hoang

California

M.O.M. of Phoenix (age 3 years)

Pheonix Hoang

In 2012, Clare lost her three-year-old son Phoenix to meningococcal disease. One morning he woke with a mild fever, but played and ate normally. After a nap, he started vomiting and had diarrhea. His temperature was 104 degrees. Clare rushed Phoenix to the ER where his condition worsened. He spent the next three days on life support while doctors tried to save his life. On the fourth day, Phoenix passed away.

Clare works with the National Meningitis Association because she wants parents to be aware of the symptoms of meningitis and understand that they can ask for a meningococcal vaccination for their young children. Phoenix’s twin brother has been vaccinated.

Jenna Mangiagli

California

T.E.A.M. Member and M.O.M. (Jenna survived at age 2 years)

Teresa Mangiagli

Jenna was almost two years old when she woke from a nap with a slight fever during a bad flu season. A little later, I suspected something wasn’t right and brought her to the home of a close friend and pediatrician. Jenna’s temperature was 106 degrees and she had two red dots under her arm. My friend sent us to the ER. The disease created deep open wounds, but Jenna survived without amputations. She had to learn to walk and talk again after being in the hospital over three weeks.

Teresa and Jenna are grateful that their friend recognized the early symptoms and feel lucky that Jenna fully recovered. They are working with NMA to help spread awareness about meningococcal disease in their community.

Kimberley McClintock

California

M.O.M. of Shane (age 6 years)

Shane McClintock

Kimberly’s son, Shane, was a vibrant, healthy 6-year-old boy. He spent his days playing video games, racing motorcycles and anticipating the opening of the local skate park. Shane’s good nature earned him the respect and adoration of his family and friends. One day, Shane complained of back and leg pain and a headache. Kimberly thought he just needed rest and suggested a nap, but his symptoms, including vomiting and diarrhea, worsened. That evening, his sister called an ambulance after noticing his rising fever, shallow breathing and a bluish tint to his skin. When the paramedics arrived, Shane’s temperature was 104.9 degrees. Later, a rash appeared near his collarbone and spread across his torso. Doctors diagnosed Shane with meningococcal disease, but it was too late. Shane died less than 15 hours after his first symptoms.

“I didn’t recognize the symptoms or realize how serious this disease can be when it struck my son,” said Kimberly. “I only hope that by sharing my story others will see the value of awareness and immunization.”

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