A Lost Child, a Mission to Save Others
Frankie Milley’s son died a horrible, sudden death from meningitis. And now she’s working to protect other families from the same tragedy.
-April Daniels Hussar
“When you come out of the shock of burying your child, you have one of two choices. You can either crawl in the grave and go with them, just die with them, just allow yourself to die — which is what you really want to do — or you can make a choice to get busy and try to prevent it from happening to other kids and other families.”
-Frankie Milley, Founder, Meningitis Angels
Frankie Milley is a woman with a mission — to prevent other parents from losing their children to meningitis, the devastating disease that took the life of her only son, Ryan, when he was only 18 years old. As the founder of Meningitis Angels, Frankie has worked tirelessly to both educate the public about meningococcal disease and to help the children and families whose lives are profoundly, horribly affected by it. When she speaks, Frankie focuses on the personal cost of meningitis — not only the deaths, but the survivors, who often live with severe disabilities and disfigurement. She talks about the need for education, awareness and most of all, prevention. It’s her mission in life, and she tells a powerful story, a story that begins in the worst tragedy a mother can imagine, the loss of her child, and somehow ends in hope.
I spoke with Frankie the day after she attended a stakeholders meeting in Washington DC on May 25th. The meeting, organized by the Centers for Disease Control (CDC), brought together various health organizations, advocacy groups, concerned citizens and CDC members to discuss infant meningococcal disease and vaccines. Over the summer there will be four regional meetings, which will be held in Seattle, Chicago, Denver, and Concord, NH.
Frankie, tell me about these meetings. Are they specifically to decide if an infant meningitis vaccine should be approved and added to the infant vaccination schedule?
Right now they’re gathering information and public opinion … to see if this is something the public would want and that the medical field thinks is the thing to do. At the end of the day, yes, they’ll be using a lot of this data to make their decisions.
What do you feel the general public opinion is about meningitis and vaccines?
I think the general public doesn’t know a whole lot about infant meningococcal disease. Other than our site (Meningitis Angels), you really don’t see a whole lot about it. Because we haven’t had vaccines for it in the past, I think … and if you don’t have something to prevent something, you don’t necessarily want to talk a whole lot about it. That’s not a good thing because there are preventions. Right now, there are available approved vaccines for children, and new vaccines for infants that are expected to be approved soon. In addition to vaccines there are other things you can do. It’s really important that parents are educated about it.
We’ve created a new website – www.protectinfantsnow.org – where parents can see videos from some of our Angel parents and survivors, learn the facts about the disease and understand why it’s important that disease is prevented.
What went on at the meeting? How did it go?
The CDC did a really great job about laying out the disease information, and then I was allowed to present along with other organizations, to present and show the face of the disease. We presented a video and I spoke about various infants and children in our group who would have not contracted the disease if their parents had known about the available meningococcal vaccines and had their children vaccinated. It was a real informative meeting, just to discuss the disease and the vaccines that are being looked at by the FDA for approval now. It was just a really great day.
Why is this such an important issue to you?
I lost my only child Ryan to meningococcal disease at the age of 18. He went from having a fever to blood streaming from every orifice of his body in less than 14 hours. And after that, I found out there was a vaccine that could have prevented it, and I didn’t know about it. And I thought, that’s not right. So I began my campaign almost 12 years ago … to make sure that other parents were made aware of this disease.
Parents need to be educated on the disease — and on the outcome of what the disease can be if you don’t vaccinate. When it comes and strikes a child, it’s devastating. About half of infants die, and the ones that don’t die are severely debilitated.