CURE - Citizens United for Research in Epilepsy It's Time We Found a CURE CURE Epilepsy Research

To the New Jersey State Legislature
December 17, 2012

Good afternoon. My name is Gardiner Lapham and I am here today because I lost my son to an often unheard of phenomenon, Sudden Unexpected Death in Epilepsy or SUDEP. Unfortunately, SUDEP is not as rare as we might like to think.

My son, Henry, was a beautiful, happy and healthy little boy. He was nearly 4 ½ when he suffered his first epileptic seizure. Only a few weeks after seeing a specialist and being started on medicine, Henry died in his sleep. It happened one cold February morning when I went in to wake him up and found him facedown in his pillow, lifeless. All that we did that morning could no t bring him back.

A mere five weeks after Henry’s first epileptic seizure, he had died. It happened so fast. In addition to the horrific pain of losing my oldest son, I felt so angry and blindsided. How could this have happened? He had great medical care. I was told that he would likely grow out of his seizures, not to worry. Gardiner LaphamAnd to think, I had a background in nursing and public health and still had no idea that epilepsy could be so fatal. Why had no one told me? Could I have done something to prevent this?

After Henry died, I quickly schooled myself on this little discussed phenomenon and I also worked to educate our local Medical Examiner. I learned that among children with epilepsy, SUDEP is the leading cause of death, causing at least 38% of all death. And I learned that people with epilepsy have a more than 20 times higher rate of sudden death than does the general population.

Despite my efforts to wor k with our local ME, I was devastated to learn that Henry’s death was improperly classified and his tissue stored in such a fashion that is was not usable for research.

Since this time, my way of healing and honoring my son has been to work on this issue. I have joined the board of a national epilepsy research organization (Citizens United for Research in Epilepsy, CURE), I have spoken out about the devastation epilepsy can cause and I have worked to raise money and awareness for SUDEP research. Truly, the brightest light in my quest to advance understanding of why my son died and, more importantly, to find ways to prevent SUDEP lay in the potential of this bill you consider today.

The tremendous lack of data on SUDEP deaths continues to impede progress in understanding the cause(s) of this occurrence and the development of prevention strategies. The establishment of a database of clinical information accompanied by a repository of tissue and blood will allow for testing of the many hypotheses that surround SUDEP. Animal models have been moving forward, however, human data and tissue are required to translate this work to the clinical realm. Medical Examiners are a critical component to ensuring that SUDEP cases are identified This bill, which would require medical examiner training about SUDEP and request decedent's medical information and brain donation for research, will go a long way to build a database of essential clinical information that will ultimately identify people at highest risk and protective measures to prevent death.  Though I cannot bring Henry back, I hope for nothing more than to prevent others from having to suffer such a loss. I firmly believe tha t with persis tence a nd New Jersey’s incredible leadership on this issue, we can unravel the mysteries of SUDEP and put an end to the fear and anguish it causes. Thank you for your time and for your consideration of this landmark bill.

Gardiner Lapham

 

 

 

CURE For questions, please contact Julie Milder at the CURE office, 312.255.1801, or email julie@cureepilepsy.org.

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