Emily Stillman, of blessed memory.
Disclaimer: The contents of this article are not intended as a substitute for professional medical advice, diagnosis or treatment. Please consult your physician for personalized medical advice.
A little fact about me: I am the oldest of six girls, affectionately self-coined The Sixters. From top to bottom, we stretch an entire 18 years. Chai. To life. Poignant, considering the story you are about to read.
Deborah is my bookend sixter, the youngest of all of us. As an infant, she unwittingly sparked my fire on the topic of bacterial meningitis. Oh, how I am so glad she does not remember this. However, it wasn’t until close friends, Alicia and Michael Stillman lost their daughter to this dreaded disease three years ago that I became ready to take pen in hand to help educate and advocate—to make a difference in some small way. Bacterial meningitis is a serious and sometimes fatal infection of the membranes covering the brain and spinal cord. Side effects can be devastating—deafness, blindness, paralysis and loss of limbs to name a few.
Rewind to 1982. I was barely 18 years old and only two weeks into my freshman year away at college when I received the call that my youngest sister had made her grand entrance into the world. I made my way home from school to breathe her in and nibble on her little nose and toes like a proud big Sis. Deborah was perfect— and off I went back to college.
Six months later, another call. Deborah was in a coma at Children’s Hospital of The King’s Daughters, diagnosed with bacterial meningitis. I listened. I cried. And firmly understood that her life was very much at stake. An interminable month of watching and waiting passed, and finally Deborah came home with no longterm side effects. We counted ourselves amongst the lucky… and life went on, albeit with profound new perspective.
Fast forward to 2013 to my Michigan friends, the Stillmans.
“Emily was at Kalamazoo College and phoned home from her dorm room,” says Alicia.
“Mom, I have a headache…I was up late studying…I’m achy, too,” she recalls Emily saying. “I thought she had the flu, or was overtired from all the studying. I told her to take some ibuprofen, get some sleep and I would check in with her the next day.”
By early morning, Alicia received a phone call that Emily had been taken to the hospital. Her headache had spiraled drastically for the worse. “The nurses said they were testing her for meningitis,” says Alicia, “but I kept telling them Emily was vaccinated for that. I was concerned it had to be something else they were overlooking. When the staff asked if we’d like to speak with the hospital clergy, it hit Michael and me that Emily was gravely ill.”
Thirty-six hours later, on February 2, 2013, with her family by her side, Emily lost her life to bacterial meningitis at age 19. Yes, it happens that fast.
“I didn’t understand,” says Alicia. “I had all three of my children vaccinated with everything available at all the age appropriate times, including the meningitis vaccine. It made no sense to me that she contracted this disease. So I kissed Emily goodbye and made a bedside promise: to find out what happened and do everything within my power to help prevent it from happening again.”
Alicia began her search for answers as to how Emily contracted bacterial meningitis, even though it was a disease she had been vaccinated against. In short, Emily had contracted meningitis serogroup B (MenB)—a strain that is not included in the conjugate vaccine routinely used here in the U.S., which only protects against strains A, C, Y and W135. MenB is the same strain of meningitis that caused the widely publicized outbreaks at Princeton and University of California Santa Barbara in 2014.
Adding insult to tragedy, Alicia learned that a MenB vaccine did exist—but it was only available in Canada and Europe at that time. “I was shattered to learn that Emily died from a vaccine preventable disease. Had I known about the existence of this vaccine, I would have carted my children across the border to Canada and had them vaccinated.”
To channel her grief and honor her promise to Emily, Alicia founded The Emily Stillman Foundation. She started Get Vaccinated programs to help people access MenB vaccinations before they were available in the U.S. “We chartered buses,” says Alicia, “and escorted families across the Detroit/Windsor boarder to obtain these vaccines. Meningococcal disease is a vaccine preventable disease, but you do need to receive the vaccines in order to prevent it.”
What you need to know about getting your child vaccinated for Meningitis Serogroup B (MenB)
Parents, always consult with your physician and determine what is right for you, but consider the following information. Certain populations such as infants and children are at higher risk for this disease. College students also fall in a higher risk category because of close living quarters where bacteria easily multiply. Their immune systems are also further stressed by lack of sleep. The disease can be passed through saliva, for example by sharing utensils, drinks, cigarettes or through kissing.
Today, two MenB vaccines are available in the United States. Trumenba was licensed in October 2014, and Bexsero in January 2015. The number of doses required and strengths vary. While it is no longer necessary to go abroad to get this protection, you may still need to jump through insurance hoops to access it.
Let me define what I mean by hoops: Keep in mind that the MenB vaccines are different from the meningitis conjugate vaccine children generally receive at a young age. Therefore, when you call to set up your child’s next doctor’s appointment, you can request the MenB vaccine if it is not yet mentioned as an option. And since it is still relatively new, paperwork between your insurance company and your doctor’s office will likely need to be processed prior to your visit to ensure that your child receives it at his/her visit. In addition, since it is a drug that is not routinely stocked in physician offices, you will also likely need to obtain the prescription from your child’s doctor in advance and deliver it to your pharmacy. Your pharmacy will, in turn, need to order it which may take a few days. Then you will pick up the vaccine from your pharmacy and take it with you to your child’s appointment. And be sure to check with your insurance company beforehand to determine your copay so there are no surprises.
Personally, I believe Alicia’s sheer determination and staunch advocacy are, in part, why the MenB vaccinations are now available here in the U.S. From founding The Emily Stillman Foundation and developing the Get Vaccinated clinics, to the national media exposure they garnered, as well as support from their local politicians, the Stillmans made Emily’s life a blessing for others. In fact, her life—and now in death—is the ultimate mitzvah: In Emily’s case, her meningitis did not spread to the bloodstream, so she was able to donate six of her organs to five recipients, along with tissue and bones to countless others.
“Emily loved singing, dancing and especially acting,” says Alicia. “She loved puzzles, games, movies, and reality television. Emily had a charismatic presence, a beautiful smile and a wonderful sense of humor that drew people in from the moment they met her. I miss her every day with every fiber of my being.”
The Emily Stillman Foundation’s mission is twofold: to raise awareness for meningococcal disease and organ donation. To learn more about Emily, meningitis, organ donation and The Emily Stillman Foundation, visit www.ForeverEmily.org.
by Dee Dee Becker