Ian Render

My name is Anne Render, and I would like to tell you about my son, Ian.

Sunday, November 9, 2014, began as a wonderful day. My first grandchild had been born three days before, and I was in Chicago sharing this special time with my daughter and son-in-law. The day ended in the worst possible way – I learned that my 24-year-old son had died of SUDEP (sudden expected death in epilepsy). 

Ian developed temporal lobe complex partial epilepsy at the age of 11. He quickly became seizure free on medication. Epilepsy did not alter life much for Ian. He knew not to swim alone, and his family and friends knew what to do in case a seizure occurred. 

When he turned 20, his medication was withdrawn, and Ian remained seizure free for four more years. On July 2, 2014, he suffered a seizure at the Denver airport. New medication was started, but a second seizure occurred on September 6. These two seizures were the only ones we were aware of in the past 12 years prior to his death from SUDEP on that November day.

Ian lived a very full life. He was a proud Michigan State University graduate in secondary education and was in his second year of teaching seventh grade mathematics after moving from Michigan to Denver. He was enrolled in a masters degree program. Between teaching and studying, Ian's daily routine was stressful and busy, but he was happy with his chosen career. 

Ian was an avid Michigan State sports fan. His easygoing nature and constant smile made him a friend to many. Ian's happiest days were spent with his students, fellow teachers, family, and friends, as well as on the golf course. 

After Ian passed, I found a statement he had written about the ways he could influence his students. The first thing Ian hoped to do was put a smile on their face every day. The second thing he wished to exemplify was that some moments in life may seem like a failure, a mistake, or just purely unfair. He wanted to let his students know that the road to success isn't always perfect, but the important thing is how you overcome these difficult times. 

Ian's favorite book was Randy Pausch's The Last Lecture, in which Randy described the lessons from his life he would leave as a legacy to his young children before dying of cancer. We chose a quote from this book and made bookmarks for Ian's students and for those who attended his memorial service. 

We can't change the cards we are dealt, just how we play the hand.

This is also a statement I want to follow in dealing with the loss of my son.

I was looking for answers within hours of Ian's death. On the Epilepsy Foundation's website, I read about SUDEP. I had never heard of this, and Ian’s pediatric neurologist had not mentioned it. The coroner's office of Adams & Broomfield Counties in Colorado confirmed SUDEP as Ian's cause of death. Since Ian seemed to have an easily treatable form of epilepsy, neither he nor I had used the Epilepsy Foundation for information. I wish I would have, as we would have known about SUDEP.

Part of the information I read involved the North American SUDEP Registry (NASR). NASR collects DNA and brain tissue for scientific studies to assess risk factors and causes of SUDEP. Immediately I wanted to be involved and to see if Ian's tissues could be used to help understand and prevent this horrible tragedy for others. Though it is best to contact the Registry as soon as possible after your loved one's passing, some of Ian's tissues could be used despite the two weeks that had passed since his death. 

Once I contacted the Registry, I was called within a day for a brief screening concerning Ian's medical history. An approximately 45 minute interview followed within a few days to gather specific information regarding Ian's medical history and day of passing. I also gave consent for Ian's medical records to be released to NASR. It was hard to do the interview so close to losing him, and I cried through parts of it. But I was treated with respect, compassion, and concern, and it was worth it to me to make Ian's life part of the SUDEP solution. 

In closing, I encourage those with epilepsy and their families to contact the Epilepsy Foundation for information no matter how well their seizures seem to be controlled. I also encourage any of us who have lost a loved one to contact the SUDEP Institute for support and the North American SUDEP Registry. All cases of SUDEP occurring within the last five years can be enrolled in the registry. 

It is true that we cannot change the cards we are dealt, but some day information from our loss may prevent that SUDEP loss for another.

Thank you for reading Ian’s story.

Anne Render

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