Emily's story

My life changed forever on January 31, 2013 at 8:15 a.m.  Before that moment, I was a proud busy mom juggling a career and being a mom and wife with 3 beautiful children – Karly 21, Emily 19, and Zachary 16.  The night before, I had received a phone call from my Emily, who was a sophomore at Kalamazoo College - two hours away.  She had a headache – a simple headache.  I thought she might be coming down with the flu.  She thought it was because she had stayed up all night studying for two large exams.  I told her to take motrin and get a good night’s rest.  I did not know this would be the last time I would ever hear her voice.

The next morning I was called by the Dean of Kalamazoo College who informed me that Emily had been admitted to the hospital during the night, and diagnosed with meningococcal disease, and they wanted me to get there right away.  My daughter was critical.  I begged them to double check the results.  I knew my daughter had been vaccinated with “the meningitis shot”, and therefore, already was protected from this dreaded disease.

Meanwhile, Emily woke in the middle of the night, and felt her headache was worse.  When her roommates took her to the hospital, she was treated for a migraine.  Several hours later, as her disposition began to change, the lumbar puncture was performed, and meningococcal confirmed.  By the time I was contacted at 8:15 the next morning, Emily was already in a coma.  That was how fast this dreadful disease attacked my beautiful, and previously healthy daughter.

I was alone when I arrived at the hospital, truly having no idea what I was about to encounter.  My husband was away on business.  My older daughter was studying in South America.  My son was in school.  My parents were out of town on a vacation. 

The esteemed medical staff tried every known treatment. A craniotomy was performed to accommodate the swelling in her brain.  Our friends in the medical community made calls and consulted with specialists all over the country.  Although everything was being done to save our daughter, nothing was working.  By this time, I had begun to call my family home.  I think the moment I made the decision to bring Karly home from South America was the moment I realized Emily may not recover.   

Within 30 hours from the onset of that simple headache, we were told my daughter had no brain activity.  I will never forget that moment as long as I live. I will remember exactly where I stood, where I fell to the floor, and where I was when I screamed – Forever.

We said goodbye to my sweet daughter on a cold morning in February – together for the last time, my family of five.  I made a promise to her that day.  As I apologized that I could not protect her, I promised her that I would figure out what happened.  I told her I would be her voice – and I would make sure this could not happen to other people.  This pain, this tragedy, this disease. Why?

Over the course of the next few months, I would come to learn that my precious Emily had contracted the B strain of Meningococcal Disease.  She was not a part of an outbreak, and her immune system was not compromised in any way.  I learned that my daughter had died of a vaccine preventable disease because the vaccine – that did exist – was not available in the United States.  That was completely unacceptable to me – and it was a call for action – and The Emily Stillman Foundation was found. 

I have struggled every single day to make sense of Emily’s death.  The truth of the matter is, I will never make sense of it.  My daughter did not have to die.  The vaccine should have been available in the United States, and she should have received it. Through The Emily Stillman Foundation, I advocate for all meningococcal vaccinations.