Counsel your students to get vaccinated for Meningitis B – Emily Stillman’s Story

Three years ago, my life changed forever. My beautiful, healthy 19-year-old daughter Emily, a student at Kalamazoo College in western Michigan, contracted Meningococcal Disease – serogroup B. It started with a headache. Thirty-six hours later, she died. I felt like I had died with her. The loss of my child was like none other.

Two days earlier, Emily called home from college. She had a headache. She thought it was from lack of sleep, and I thought she might be coming down with the flu. She had been up the night before studying for two large exams. I suggested she take Motrin and get some sleep. Nothing seemed abnormal.

Today, I am sharing my story to fulfill a promise I made to my daughter while she lay dying in a hospital bed from a vaccine-preventable disease we thought we had protected her against. After Emily’s death, we learned that our child was vaccinated against just four of five strains of meningitis. There was a vaccine against this strain, but it was not yet available in the U.S. We just did not know about it. No one did.

So aside from the indescribable grief, I was confused as I kissed and hugged my little girl for the last time, and looked at her laying in a hospital bed with every part of her body tangled among tubes and wires. I believed she could hear me. I held her hand tightly, and told her it was okay to go and to be at peace. I said I would figure out how this happened, and how she got a disease we thought we had protected her from; I would be her voice.

Emily had received two doses of the quadrivalent meningococcal conjugate vaccine (MCV4) as recommended, with the first dose at 11, and a booster dose at 16. This protected her against Meningitis A, C, W and Y – BUT NOT B. We soon learned about the vaccine that could have prevented Emily’s death. It was not yet available in the U.S., but it was readily available in other countries.

I was full of guilt, feeling like I did not do something I was supposed to do. What did I miss? How did I miss it? Somehow I was going to make this right, and make sure this did not happen to other families. I vowed to find a way to protect others from this deadly disease few of us even understood was a risk.

Soon after Emily’s death, I made plans to take my other two children to Canada to get vaccinated. That was the same time there was a Men B outbreak at Princeton and the University of California – Santa Barbara. These outbreaks drew national attention and pushed the FDA to accelerate the approval process for two different MenB vaccines. The outbreaks caused panic among parents preparing to send children off to college. The schools got special permission to bring in the vaccine. I was relieved but also furious. I wondered why the vaccine had not been available for Emily – for everyone – if it was safe.

Meanwhile, word spread that I was going to Canada, and parents started calling. We created the Emily Stillman Foundation and chartered buses to take other children to Canada. We also started building awareness for the disease, and launched an advocacy campaign to let parents know their children needed a vaccine they might not even know about. We continued taking busloads of students and their parents to Canada until January 2015, when the vaccine became readily available in the U.S.
We still have a lot of work to do to prevent other families from experiencing what we did. I think about Emily’s tragic death every day. The story of how it happened continues to haunt me.

Emily’s pain worsened after she took Motrin that night we last spoke, and she landed in the hospital in the middle of the night. I got a call from the dean of her college the next morning; she told me Emily was treated for a migraine at first, but that doctors had done additional tests that confirmed meningococcal disease. She said I needed to get to the hospital as soon as I could. Despite the urgency of her words, I had no idea how serious it was. I thought it had to be wrong because we vaccinated our children, and it did not seem possible for her to have this disease.

My husband, Michael, was in Arizona, so I got in the car and drove by myself. I spent nearly the entire two-hour drive on the phone with medical professionals, begging them to double-check the results. By the time I got to the hospital, Emily was in a coma, and the medical team was preparing her for a craniotomy to relieve swelling in her brain. my day nurse took me to the preparation room to see her and asked if I wanted them to call clergy. I knew it was bad. I called Michael. We had no preparation, no training, and no practice for what was to come. This was not the order of how it was supposed to be.

I walked around in a fog for the first few months after Emily died. I continued to ask, “Why me?” Finally one day, instead of asking “Why me?,” I said, “Because it’s me,” and it was time to fulfill the promises I made to my precious daughter on that cold February morning of her death. We founded the Emily Stillman Foundation to honor that promise.

Today, I am a vaccine advocate, and I am deeply concerned that most healthcare providers are still unfamiliar with the availability of the MenB vaccine. Since my daughter died, two MenB vaccines have been approved by the FDA. The Advisory Committee on Immunization Practices last June recommended that all children, ages 16 to 23, be vaccinated against this strain of meningitis. The ACIP unfortunately did not recommend that all children get the vaccine.

We could not have done more to save Emily, but we can protect your students. Now. We need Counselors to take the lead and make sure their students are protected. Please share our story with your parents, and encourage them to vaccinate their children before they go to college.

I wake up every morning knowing that my daughter did not die in vain. Every day, I make a conscious decision to live, to laugh, to smile. I can do that knowing that we continue to save other families from this unbearable loss. I live to fulfill the promise that I made my daughter on that cold February morning. I am Emily’s voice every single day as I spread the word so this doesn’t happen to other people.

Alicia Stillman is the founder of the The Emily Stillman Foundation, which along with other immunization awareness initiatives like The Vaccinate Your Family campaign, will continue to educate parents about the benefits of MenB vaccine. They also advocate organ donation. Emily Stillman’s family donated six of her organs, saving five lives; they donated tissues and bones, saving many others.
Please share this blog, and this public service announcement, with parents at your school. is my emotional attempt to educate the public about the importance of “complete and total” protection against all serogroups of mMeningococcal dDisease. Complete and total protection means both recommended doses of the conjugate vaccine (MCV4) with the first dose at age 11-12 years of age with a and booster dose at 16,17), and a complete series of either one of the two available MenB vaccines which are recommended between 16-23 years of age, but preferred between ages 16-18.
I know this video is very hard to watch. Trust me when I say it was even harder to film, and hardest yet to live through. But it is an important message, with a strong call to action. As we say at The Emily Stillman Foundation, “Get Committed, Get Educated, Get Protected, and Get Vaccinated”.