Feature Article: Two Mothers. One Mission — Saving Kids from Meningococcal Disease

Meningococcal disease, caused by Neisseria meningitidis, can affect people of any age; however, infants, adolescents and young adults are most at risk. Six types of meningococcal bacteria (A, B, C, W, X and Y) have been identified around the world.

Meningococcal bacteria can overwhelm an individual so quickly that the person can go from being completely healthy to dead in less than 24 hours. These bacteria can invade the lining of the brain and spinal cord or the bloodstream:  

• Meningitis — An infection of the brain or spinal cord. Symptoms can include fever, headache, stiff neck, vomiting, exhaustion and confusion.
• Sepsis — An infection of the bloodstream. Symptoms can include fever, chills, rash, low blood pressure, and dark purple spots on the arms and legs.

Often, those lucky enough to survive spend the remainder of their lives with permanent disabilities. However, the devastation caused by meningococcal bacteria can be prevented by vaccination.

Two different vaccines are available:

• MenACWY protects against meningococcus types A, C, W and Y. This vaccine is recommended for all adolescents between 11 and 12 years of age.
• MenB vaccine protects against meningococcus type B, and it’s recommended for all teens between 16 and 18 years of age. The vaccine is also recommended for those up to 23 years of age who were not previously vaccinated.

Both vaccines are required to be protected against the five types of meningococcus that most commonly cause disease in the U.S. Unfortunately, many parents don’t realize there are two types of meningitis vaccines and not all healthcare providers are proactively discussing both vaccines with their patients. That’s why two mothers have united to bring awareness to this very important issue.

Two mothers. One mission.

Patti Wukovits, Executive Director of the Kimberly Coffey Foundation, and Alicia Stillman, Director of the Emily Stillman Foundation, are two mothers who each lost a daughter to meningococcus type B before a MenB vaccine was available to protect them. Patti’s daughter, Kimberly, was only 17. Alicia’s daughter, Emily, was only 19. These mothers united in their mission to raise awareness of this deadly disease and the vaccines available to help prevent it. Together, they co-founded the Meningitis B Action Project so that no other parent would have to experience a loss like theirs. The Parents PACK team recently talked with Patti and Alicia about their daughters and their important efforts to educate other parents. We thank them for bravely sharing their stories with our readers.

About their daughters and their personal experiences

Patti

Kimberly was a funny person, vibrant, silly, full of life. Everyone just loved this girl, and she loved to sing. She would grab a mic; Karaoke time, she'd be the first one up on stage. She wasn't shy at all. If there wasn't a mic, she'd grab a mop. She just loved to perform.

Kim grew into a beautiful, beautiful young woman. And she knew what she wanted to do with her life. At 17 years old, she knew that she wanted to be a pediatric nurse. She wanted to follow in my footsteps as a nurse. Kim was a 17-year-old high school senior, and was looking forward to prom, was looking forward to graduation. She had this beautiful gold-laced prom dress hanging on her closet door, and she was ready to go. She was ready to start the next chapter of her life.

Listen to Patti as she recounts her family’s experience with meningitis B.

Alicia

Emily was my middle daughter, and she was the light of a room. When Emily would smile, from the time she was a little girl, Emily would smile not just with her lips turning up, she would smile with her eyes. She was expressive and jovial, and everybody loved to be around her. Her dream was to be on Saturday Night Live. And the truth of the matter is she was very funny, and she might've made it someday. But her father and I told her that she had to have a plan B. And so, her major in college was psychology.

Listen to Alicia as she recounts her family’s experience with meningitis B.

Why they chose to share their stories

Patti

I share Kim's story to help prevent another tragedy from happening. I couldn't protect my daughter Kimberly against meningitis B. There was not a meningitis B vaccine available in the United States at the time. But now there is in the United States, and I feel it's my duty; I feel it's my obligation to make sure that all parents know about it, that they know her story, that they know that now they can protect their children.

Listen to Patti talk more about her decision.

Alicia

I share Emily's story all over the world because on a very cold, snowy, awful day in February of 2013, I had to say goodbye to my beautiful, healthy 19-year-old daughter, hooked up to tubes and machines, the likes of which I will never forget. And I told her to go in peace, that it's OK, and that I would be her voice.

Listen to Alicia talk more about her decision.

About the Meningitis B Action Project

Patti

The Meningitis B Action Project is a nationwide educational and advocacy campaign. We educate all over the United States. We speak at medical conferences, hospitals and medical schools. We speak at colleges and high schools. We present to policymakers because that's a very important part of what we do. We speak at the local, state and national level.

The Meningitis B Action Project has become the educational arm of both of our foundations. And we have created many educational materials, brochures, posters that are hanging in college campuses and medical offices all across the United States. Our educational materials simplify the message that there are two separate meningococcal meningitis vaccines — MenACWY and MenB — necessary in order to be fully vaccinated against meningococcal meningitis.

So, through the Meningitis B Action Project, we encourage healthcare providers to have the conversation with their 16- to 23-year-old patients and their parents to talk about meningitis B, the risks of meningitis B, how it's transmitted, and how they can best prevent the disease.

We also speak with 16- to 23-year-olds and their parents and empower them with information, to have the conversation with their healthcare providers should they not bring up the conversation about meningitis B. It's so important that that conversation is had. Although we feel that the healthcare provider should be the one bringing up the conversation, we also know that isn’t always happening. That is why we want to make sure that parents and young adults have the information to bring up the meningitis B vaccine proactively.

What parents can do

Alicia

It's really important that parents know what vaccinations their children get. Even young adults as they start to migrate from a pediatrics practice to a family practice, it's really important that parents are aware that the meningitis vaccine that their children get at age 11 and then again with the booster vaccine at 16 or 17 protects them against the meningococcal strains A, C, W and Y. There is no protection included in this vaccine for meningitis B — that is a separate vaccination series.

Parents need to take that initiative and ask their medical provider: Has my child been protected against all serogroups of meningococcal meningitis that they can be?

Get more information about meningococcal disease

• Meningitis B Action Project
• A Look at Each Vaccine: Meningococcal Vaccine
• Meningococcus: What you should know Q&A — English | Spanish

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