Monday, July 18, 2011

My Beautiful Boy: A Mom's Story

Editor's Note: One of the most important immunizations on the childhood schedule is the Hib and meningococcal vaccines. Few of us have seen firsthand the horrors of this brutal, quick-moving, and merciless disease, and yet we hear of cases in children and young people year after year after year. That this completely preventable disease still shows up in children is heartbreaking. That some parents still refuse to vaccinate their children against it is even more so. We are deeply grateful to Frankie Milley, mother and founder of Meningitis Angels, a nonprofit organization founded after the death of Frankie's son, Ryan. Below is her story. 

It is the end of yet another long day. It is once again midnight and I am at my computer working. I have had 13 years of these same days: Years of days without my precious son: Years without his laugh, his voice, his smile, his wit, his hugs, and his love. 

Ryan was my only child. He was eighteen, just graduated from high school, preparing for college and planning a pro golf career. He was a healthy young man one day and the next day meningococcal meningitis struck.  Within hours he lay dying on an emergency room table, with blood coming from every orifice of his body. 

I stood there helpless as I watch the life and blood leave my beautiful boy. His father reaching for him repeating the words, Daddy loves you baby boy over and over again.  The last words we would hear Ryan say were to his dad. They were: “I know.”

In the days that followed I found there was a vaccine that could have prevented Ryan’s death.  No one ever told me about it. I was in the medical field for over twenty-five years. How could I have not known that meningococcal disease not only kills but leaves its victims with severe disabilities?  Had I known Ryan would have been vaccinated.

The medical examiner told me Ryan would have lost all four extremities, been blind and deaf, had no kidney or adrenal function, severe brain damage, and more.  This disease had come from nowhere right out of the pits of hell. In just a few hours it took away his dad’s and my rights to ever be called dad and mom again, to dance with my son at his wedding, to ever hold a grandchild, to have his comfort in our old age when one has to leave the other. In just a few hours this preventable disease would forever change our life. It would leave a void and a grief that would never disappear.

In the days, weeks, months, years to follow I founded Meningitis Angels and what has become a lifelong work of advocacy. I began to realize there were many kids out there who were dying or being debilitated  with not only meningococcal disease/meningitis but also pneumococcal meningitis and even a few with Hib. Hib had been eradicated for the most part in the US due to recommended vaccination.  However, we have seen it resurface in areas where vaccine refusal was present. 

A few years later we would see pneumococcal on the decline due to new vaccine and more recommendations and in the last five years we have seen a decline in adolescent and young adult meningococcal disease.  I have fought hard, participated in and even led the fight at times for the recommendations and mandates around the country. 

The meningococcal vaccines are indicated for ages 2-55 and thanks to CDC recommendations they are now recommended for those kids age 11-18 and all who enter college.  Recently one of the vaccines’ indications changed and is now recommended for infants down to 9 months with compromised immune systems. 

Infants under one year now remain the most vulnerable of all for meningococcal disease.  Among our Angels are several infants and toddlers who have died or have been left with severe debilitations including brain damage, severe seizure disorders which lead to brain surgery, organ failure leading to transplants, the loss of arms, legs and even their little faces. Parents watch helplessly as their precious children literally rot away and body parts self-amputate and still die.

Two vaccines are being reviewed by FDA for approval of usage down to age 2 months.  CDC is gathering public opinion in four regional meetings on whether or not to recommend these vaccines when available. Though I praise them for this effort I feel in my heart that meetings in Seattle Washington, Denver Colorado, Concord New Hampshire and Chicago Illinois do not give a fair representation and voice of the whole country. This is why we have started our campaign Protect Infants Now which includes an online petition. 

Meningitis Survivor Helen Keller said, ““Alone we can do so little; together we can do so much.” I say if infants and children had a voice and a choice between deadly diseases or a vaccine to prevent it they would choose vaccination. But they don’t so we have to be that voice: One of fact, science and choice of health and life.

You can sign our petition at Protect Infants Now . They can learn more about meningitis and contact me though our Angels at