Dare to attend PAME 2016

Henry’s Story

Henry Lapham

In many ways it’s still hard to believe that I lost my 4-year-old son, Henry, to epilepsy nearly 8 years ago. He was a happy, loving, and healthy little boy, full of life and promise. He began having seizures when he was 4 years old. We thought he would out grow them and had no appreciation for their potential devastation.

But before his epilepsy diagnosis was even complete or he had a chance to become therapeutic on his medications, he died unexpectedly during his sleep. Finding him limp, cold, and grey one horrible winter morning and doing CPR, in vain, on my first-born child is still too surreal to really imagine.

Soon thereafter, Henry’s epilepsy doctor met with us to discuss what had happened. We were desperate for answers. He was a kind man and explained to us that this was a fluke of nature, a one in a million kind of event. While I appreciated his care and compassion, for me, hearing this was crushing.

On top of the immeasurable grief, the concept that the loss of our child was a singular tragedy was almost too much to bear. I couldn’t believe that this didn’t happen to others and was astonished that our medical community didn’t know more about the phenomenon of sudden unexpected death in epilepsy, known as SUDEP.

Turning Grief to Action

My grief propelled me to find answers and I eventually discovered the nascent but growing effort in North America to understand and prevent SUDEP. It gives me hope to know how far we’ve come in the past decade. SUDEP is no longer considered a singular and tragic phenomenon. It is now a public health issue of importance, recognized by the Institute of Medicine, Centers for Disease Control and Prevention (CDC) and National Institutes of Health (NIH). Yet it still needs more attention from clinicians, researchers, the public health community, and advocates. 

PAME – Partners Against Mortality in Epilepsy – has become an important forum to advance this cause. It is much more than a 4-day research meeting. PAME has helped to create community and shared purpose among researchers, clinicians, and families. Together we are challenging current thinking, asking new research questions, collaborating, and pushing forward for increased understanding and awareness of how to prevent this tragedy.

2016 PAME Conference

The third-ever PAME meeting will take place in Washington, D.C., on June 23 to 26, 2016. The meeting promises to be the boldest yet. Registration will be available soon at pame.aesnet.org.

#DareTo Attend PAME 2016

I hope you will join me, as people with epilepsy and their families are integral to the meetings’ success. Our stories and voices are critical in driving awareness, urgency, and advancing research. I believe we have an opportunity to be part of the solution for those living with epilepsy and for those to come. 

Though our lives are forever changed and nothing can bring back our beloved son, I am hopeful that greater understanding and awareness can one day help save and improve the lives of millions of people who suffer from epilepsy.

Authored By: 
Gardiner Lapham RN
MPH
Authored Date: 
12/2015