If you've enrolled your loved one in the North American SUDEP Registry, we encourage you to share his or her story here. 

We ask that you please limit your submission to 2,000 characters and email it along with a photo to the NASR Coordinator: info@sudep-registry.org.

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John Paul Popovich, aged 19

John Paul was our oldest of three children. He had a seizure at age 7, which the doctor diagnosed as a benign rolandic seizure. Yearly EEG’s & annual neurologist appointments ensued for the next 10 years. In the Spring of 2014, at age 17 and now a high school junior, John Paul had his 2nd seizure & was put on low dosage medication. In the Spring of 2015, he had another seizure, at which time medication was increased. We were assured his mild form of seizures were under control, and not to worry. This past December, John Paul had just completed his first term at the University of Virginia and was home for the holidays. Three days later, our son passed away, from what we would later learn was SUDEP. Like all other families who have gone through this tragedy, the loss of a child has been devastating and inextricably changed our lives forever.

Growing up, John Paul was an outgoing, happy, and loving young boy who had a great sense of humor. He had a wide circle of friends, loved the water and Disney World. During his teen years, he developed a strong intellectual curiosity about the world around him. He was a voracious reader on a variety of topics, but particularly loved Stephen King novels. He was knowledgeable on a wide-array of topics, including politics, economics, history, and math. He was an accomplished swimmer, breaking the Virginia high school state record in the 200IM as well as several records in high school. Though he finished only one term of college, he loved the University of Virginia. The stimulating social environment and rigorous academic environment which college offered had put our son on a trajectory for success in life. But above all else, he matured into a kind and decent young man who valued family and friendships. To talk with John Paul, one would never know how accomplished he was for such a young age. He was comfortable in his own skin, and treated everyone equally, with kindness, compassion and respect. And we loved him.

SUDEP cut short our son’s promising life ahead of him, as it has for many other families. Ironically, had our doctor made us aware of SUDEP beforehand, John Paul would have been the first person to immerse himself in this subject and learn what he could about this silent killer. Candid discussions about SUDEP between doctor and patient need to occur. The medical community mindset of silence must change.

-John & Karen Popovich (John Paul's parents)

 

 

Michael Meyer, aged 36

My son, Michael had his first grand mal seizure while a student at State University at Buffalo. After trying several medications his physician finally found one that controlled his seizures. He would be seizure free for 3-4 years at a time. He graduated from SUNY Buffalo with a Bachelor’s Degree in Civil Engineering but soon realized that working on construction sites was dangerous. He decided to make a change and enrolled in Touro College where he earned a Doctorate Degree in Physical Therapy. He worked at a nursing home and loved his job. He was such an easy going, kind-hearted person. We were so proud of him. He never let epilepsy stop him from pursuing his passions. He loved camping, softball, playing guitar and going to New York Yankee games. He loved his family and friends and never missed an opportunity to celebrate a birthday or anniversary.

Michael got married in 2011 and moved to another town. Shortly afterward Michael had a seizure and was admitted to a hospital close to his new residence. This prompted him to change his physician to one affiliated with the hospital. This new physician changed his medication. Michael began to have daily or weekly seizures. He was no longer controlled by one medication. In 2011 he agreed to the insertion of a Vagal Nerve Stimulator. This decreased the severity but not the frequency. He finally switched to a physician who added his old medication and that seemed to work. This doctor was successfully weaning Michael off the other drugs and he had been seizure free for over a year. We were so optimistic. However, on July 5, 2014 I found my son in his bed. He had passed sometime in the early morning. He was 36 years old. I am a Registered Nurse and I knew nothing about SUDEP. It was after speaking with his doctor that I learned about SUDEP and the registry. We miss him so much.

-Linda Meyer (Michael’s mother)

 

 

 

Katie Hunter, aged 19

Katie Elizabeth Hunter was born May 20, 1991. In her nineteen years of life, Katie grew to enjoy many activities, including: singing, dancing, participating in karaoke, horseback riding, playing cards (especially rummy!), playing paintball, baking brownies and cookies, and watching movies.

Katie graduated in 2010 from Emmaus High School, where she was a member of the school chorus and participated in Special Olympics. Her favorite foods were pancakes, macaroni and cheese, and popcorn. She loved to go anywhere with her family, but her favorite place to visit was her uncle Jimmy’s beach house in Virginia.

Katie had beautiful brown eyes, a smile that melted hearts and an infectious laughter. She was so incredibly brave and kind to everyone. Katie was both innocent and wise. While she had difficulty learning, she was a great teacher. We all learned so much more from her than she ever learned from us.

Katie’s seizures began at 6 months old. Her seizures became uncontrollable and she was eventually diagnosed with Dravet’s Syndrome in 2009. It was then we were told she was at high risk for SUDEP.

Katie was being evaluated to determine if she was a candidate for a corpus callosotomy—a type of surgery that separates the two hemispheres of the brain—the week prior to her death. It was hoped this procedure would improve her quality of life.

Katie passed away due to SUDEP on October, 18, 2010. She is survived by her parents, Robert and Angela Hunter of Allentown, PA; mother, Lisa Hunter of Lehighton, PA; brothers Scott, Jesse and Jordan; grandmother, Maryanne Balogach; and many loving aunts, uncles and cousins. Katie’s family loves her very much and misses her terribly.

-Robert Hunter (Katie’s father)

 

 

 

Mark Koncikowski, aged 36

Dr. Mark Koncikowski was a chiropractor, counselor, and devoted family man. Mark’s epilepsy likely began in childhood but his seizures were so far and few in between that his condition was misdiagnosed. It wasn’t until 2012, a year after graduating with his doctorate and shortly after opening a chiropractic office, that Mark’s seizures became more prominent. He was diagnosed with partial complex epilepsy. Mark was determined to remain as well as possible for the sake of his two young daughters, who were the light of his life.

Recalling his beaming smile when our first daughter Grace was born, he said he felt as if he had won the lottery. Mark and Grace shared a love of music, silly antics, theme parks, and lots of laughter. Our youngest daughter Veda has her dad’s intensity, his ever-searching eyes, and his thoughtfulness. Mark’s greatest gift to our girls was instilling them with empathy and compassion for others. Mark is also survived by his father, two sisters and their families, as well as his father and brother-in-laws.

Extending beyond our family and tribe of friends, Mark quietly touched the lives of many others. When his epilepsy complicated his independence, he returned to working as a counselor with the elderly and for the NYS Smoker’s Quitline. He was client-centered, an active listener, and a motivating guide for many to find a path to better health. In his youth, Mark worked with underprivileged children at St. Vincent de Paul Camp. He was a prolific writer and a self-taught guitarist. Several of his poems were published in local and national magazines. You could always find him strumming a new favorite tune.

In the early hours of October 30, 2014, Mark suffered his first and only grand mal seizure that preceded his death from SUDEP. We had concerns about SUDEP, but had been assured by Mark’s doctors that we didn’t have to worry about it because “he didn’t have that kind of epilepsy.” I knew that as a healthcare professional, Mark would have wanted to contribute to the collective understanding of SUDEP so I enrolled in the NASR study. We plan to honor his life by collecting donations annually on his birthday towards a scholarship fund to send a child in need to St. Vincent de Paul Camp, where Mark’s giving spirit remains.

-Jeanette Koncikowski (Mark’s wife)

 

 

Sarah Kattan, aged 32

Sarah was diagnosed with partial complex seizures at age 10. Despite many medication trials up until her death on September 17, 2015, she was never completely seizure-free. Sarah also had developmental disabilities. She died from SUDEP while on a cruise with her mother in Europe. We were coming into Venice, Italy, one morning and she failed to wake up. I had never heard of SUDEP until the spring of 2015, even though Sarah had been under treatment for seizures since age 10. Once I learned that it existed, I asked her neurologist about it, and he told me that it's a risk for someone with uncontrolled seizures, but that nothing can be done about it except to try to control the seizures, which he was doing.

Sarah was generally a very cheerful person who is greatly missed by her parents, her sister Ilana, and her grandmother. She worked at a sheltered workshop called ROI, doing clerical tasks, and loved her job. She had good friends there and was able to watch movies, play games, and do other activities when they were not doing a job. She lived in a four-person group home run by a local organization called the Jewish Foundation for Group Homes that had 24/7 staff. She enjoyed going places with the other residents, including out to dinner, dance classes, swimming, and picnics in the summer. Sarah also loved playing the piano. She took piano lessons once a week for over twenty years and was good at reading music. She practiced the piano diligently every day at her group home.

One of Sarah's favorite things was to go on cruises with her mother. I took her on a cruise almost every fall, just the two of us. She loved getting off the ship to go sightseeing, although she wanted to hold hands very tightly so that she didn't get lost. She also always loved the food on the ship, and going to the spa to have her nails done. The cruise we had been on when she died went to Italy, Croatia, and Slovenia. We were in Slovenia the day before she died, which also happened to be my birthday, and had a wonderful guide who took Sarah to a cafe for hot chocolate and paid a lot of attention to her. I was devastated when she failed to wake up the next morning.

–Susan Kattan (Sarah's mother)

 

 

 

Paige Nagy, aged 21

Paige developed seizures at the age of 2 and was diagnosed with epilepsy at age 4, more specifically GTC seizures. The first few years were pretty rough until her doctor found the right medication for her- then she was in good shape. She did pretty much everything kids her age did, took dance class, swam (with supervision), loved to play. When she got older Paige loved to hunt and fish too and loved to be in the woods with her pappy and uncle. Paige also had a love of travel and spontaneity and loved her family and friends more than anything. She was also a volunteer with our local performing arts theatre for many years and loved meeting the actors and groups who would come to perform.

Paige was wise beyond her years, an "old soul" one might say, as she loved ‘80s hair bands and ‘70s sitcoms and had a fondness for learning about her family history from the older generation family members.

Children and the elderly especially loved Paige which led to her career as a CNA for which she took great pride working at an assisted living facility. Sadly, this is when Paige's seizures reared their ugly head again which put a stop to her driving and affected her job. With great sadness, she had to give up her position as her seizures were now unpredictable. Through all this, Paige kept a positive attitude and didn't let it get her down. Sure, sometimes she complained about "this stupid epilepsy", but she'd bounce right back.

She had a boyfriend and a great circle of friends who supported her at all times. When she turned 21 in April it was a huge day for her and she had a smile on her face the whole day. We were all so proud of the beautiful young woman she had become.

Little did we realize that this would be the last big celebration that we would all be with her as 28 days later when I awoke for work, I found my baby girl on her bedroom floor. She was gone. At no time was SUDEP ever mentioned to us in the 19 years that she was having seizures. When I came across an article about it in our local epilepsy newsletter I was floored and started looking into it.

Our family is devastated by the loss of Paige. This past September, we held a golf scramble in her name and raised over $6,000 for the Epilepsy Foundation, which we plan to make a yearly event. We hope to also create a scholarship for the CNA program she graduated from. Of course, neither of these will ever bring our daughter back, but they will keep her memory alive and let people know her story.

–Julie Nagy (Paige's mother)

 

 

 

Ian Render, aged 24

Ian developed complex partial epilepsy at age 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. He suffered two seizures in 2014 - the only ones we were aware of in the 12 years prior to his death from SUDEP that November.

Ian lived a very full life. His easygoing nature and constant smile made him a friend to many. He was a proud Michigan State University graduate 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's favorite book was Randy Pausch's The Last Lecture. 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. Part of the information I read involved the North American SUDEP Registry (NASR). Immediately I wanted to be involved. Despite the two weeks that had passed since his death, I was able to donate some of Ian's tissues to help understand and prevent this horrible tragedy for others. I also gave consent for Ian's medical records to be released to NASR.

Once I contacted the Registry, I was called back within a day. A 45 minute interview followed to gather information regarding Ian's medical history. 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 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.

–Anne Render (Ian’s mother)

Read the full story here on the SUDEP Institute website. 

Graham Brown, aged 25

Our son Graham Brown was born March 27, 1990. We lost him suddenly on July 15, 2015 at age 25 as a result of Sudden Unexplained Death in Epilepsy (SUDEP).

Graham lived with the challenges of severe autism, was nonverbal, had an intellectual disability, epilepsy, a mood disorder and was an XYY male (he was extremely tall at 6’10”). Although he had a very significant level of disability, his autism gave him a unique perspective on life. Graham had many endearing quirks. Although he could not speak, he communicated very well and was able to convey his feelings, perceptions and wants. He taught us so much with his love of life, his pure joy (even though it could get very noisy at times), his sense of humour and his unique “Graham-ness”. Graham had a very vibrant personality. He loved nature, especially water. He also loved colouring, cut and paste, his stuffed animals, puzzles and being read books. He was very happy to live on a farm at his group home where his uniqueness was accepted, accommodated and honoured.

Graham touched many lives, not just his family but the many professionals who worked with him. We all feel that Graham taught us so much. All of us miss Graham’s joy and exuberance and his wonderful sense of humour.

–Anne MacLellan & Neil Brown (Graham’s parents)

 

 

 

Mason Langford, aged 21 months

Mason came bursting into our world at 32 weeks, weighing only 3 lbs, 1.8 ounces. Our tiny fighter. With a few extra weeks in the NICU of growing, we were able to bring him home on oxygen and an apnea monitor. All was right with the world- we had a perfect little boy. On December 23, 2013 Mason had his first seizure. We had no idea what was happening and it was a terrifying event – later listed as a febrile seizure. His seizures became more frequent, about twice per month and without a fever. Just before his 1st birthday he was diagnosed with epilepsy. He didn’t let this condition slow him down.

Mason was full of light, love, and laughter. He was our pride and joy. His smile was contagious and his laugh could make your heart explode. He loved to read books, especially Thomas the Train. He had at least a dozen train engines that he called his “beep-beeps.” Sometimes the first thing he would say in the morning when I would get him from his crib was “beep-beep”, and his little feet would pitter patter down the hall to his toy basket. Our house was a beautiful disaster. We had so many hopes and dreams tied to him and knew he would do big, wonderful things. Some of our most fond memories with Mason are snuggling on the couch, going for walks in our neighborhood (he loved to look at the birds and trees), and going to the zoo. He loved to look at the fish in the aquarium at our local zoo. Every day we had him in our short 21 months was blissful.

Mason died in his sleep of SUDEP on February 13, 2015. We snuggled before his bedtime bottle and he went off to eternal sleep. We are trying to adjust to our new normal, dealing with the shock and guilt of not knowing, and living on without our sweet boy. He was our light. I know he is in Heaven with all the beep-beeps and bird-watching a little boy could ask for. As his Mama, I would love nothing more than to see his beautiful smiling face again. His personality brought out the best in me. We want to live a life that honors Mason and would make him proud of us. We miss our sweet boy dearly every day. If you would like to read more about our journey, please look at our online journal at http://www.caringbridge.org/visit/masonlangford.

–Matt & Amanda Langford (Mason’s parents)

 

 

 

Hannah Dolera, aged 8

I was a single parent raising Hannah and she was the joy of my life. She was also my greatest teacher. This angel taught me about patience, compassion, empathy, about being thankful for what I have and not taking life for granted in her true Hannah way. Most of all she taught me about how to love unconditionally and the love for all humankind. I miss her so much, she was my only child. I feel that her gift to you will benefit your study and help the many children around the world who have suffered like her.

I belong to the non-profit Cornerstone Educational Preschool which two years ago purchased an old church on the island of Lanai. The church was built in 1937 and was recent renovated. It will reopen as a preschool for children who are on the autism spectrum and we are hoping to open for business this fall. Hannah played a huge role in this project and spent many days running around the place during its renovation. Unfortunately, Hannah left me on Christmas morning 2013 before she could open her presents. Hannah will not see the completion of the school but Cornerstone Educational Preschool will be her legacy and she will touch each child that walks through its doors. If you would like to learn more about Cornerstone Educational Preschool and make a contribution help to build upon her legacy please feel free to visit our website at http://www.cornerstoneeducationalpreschool.com.

–Nyle Dolera (Hannah’s father)

 

 

 

Lincoln Hendrickson, aged 3

Lincoln was born on December 20, 2010. He was born 4 lbs, 15 oz. His glucose level was a concern and he was brought to the NICU. 5 days later, he started to have seizures. The neurologist ordered a MRI which came back abnormal. Doctors believed Lincoln had suffered a loss of oxygen to the brain at some point in my pregnancy. We spent 21 days in the NICU. Lincoln was diagnosed with Spastic Quadriplegia Cerebral Palsy, Epilepsy, Cortical Vision Impairment (CVI) and developmental delays.

The first year and half of Lincoln’s life was a tough journey. He battled Infantile Spasms (a catastrophic childhood epilepsy), hypothyroidism, viral infections and countless modifications and trials of anti-seizure medications. We attended therapy sessions four times a week. Lincoln received Botox and Phenol Injections into his tight muscles. He saw his pediatrician and five specialty doctors. He was such a little warrior!

Throughout Lincoln's life, we participated in the Baby Steps 3K for Children’s NICU, The Epilepsy Stroll for the Epilepsy Foundation of MN, and the Pedal in Place Fundraiser for Cerebral Palsy and Gillette Speciality Healthcare. We come together as Team Linc to walk and raise money for these special programs.

Lincoln enjoyed strolling in his wheelchair down to the nearby pond to feed the ducks. He loved swimming, reading books, listening to country music, and taking naps on the couch with mom and dad. He loved preschool and interacting with his friends and teachers. He adored his cousins and neighbors. He always worked hard in therapy. He absolutely loved his adaptive bike. Lincoln went to heaven on August 21, 2014. He died peacefully in his sleep. It was a complete shock. He died of SUDEP – Sudden Unexpected Death in Epilepsy.

We did not hesitate to have Lincoln participate in a neuropathology examination through NASR. It was an important step for us to take to help those living with Epilepsy and to learn more about SUDEP. Lincoln would be proud.

Lincoln was an amazing boy. Our lives have been forever changed by our best boy. He was full of love, light, energy, happiness, and joy. His contagious laugh, huge smile, and funny snort will never be forgotten. We were so blessed to have him for 3 years, 8 months, and 1 day. We know Lincoln is in heaven. Our hearts still ache to have him here with us. If you would like to follow and read about Lincoln's journey, please visit his website at: http://www.caringbridge.org/visit/lincolnhendrickson.

–Melanie Hendrickson (Lincoln’s mother)

 

 

 

Patrick Ring, aged 29

Pat was diagnosed with partial complex seizures at the age of 11. Most people in his high school, college, and later years did not know he had epilepsy, as it was not something he often talked about. Even though the heavy doses of medication made him lethargic and he required a lot of sleep, he did not let his seizures stop him from leading a full life.

He was an avid Bruce Springsteen and Phillies fan and loved fishing with his twin brother, bowling and spending time with friends and family. He worked for over 6 years at W.B. Mason and had been promoted to Customer Service Training Supervisor. He proposed to the love of his life, Tara, right before Christmas 2013. Pat was on top of the world – happier than he had ever been with a world of possibilities and a bright future ahead of him, until epilepsy took his life away so suddenly at the age of 29 on Thursday, February 6th, 2014. No doctor over the course of 16 years EVER mentioned that he could die from a seizure.

He was found unresponsive and alone on the floor in a conference room at his work, where he had just finished conducting a training webinar. His coworkers called 911 and began CPR but he died before the ambulance arrived. Upon his parents’ arrival at the hospital, his mother asked the ER doctor if he had a seizure and the doctor replied “no, you don’t die from epilepsy.” His family left the hospital not having any idea how he had died. The following day, the coroner informed his family that she believes it may be a case of SUDEP. SUDEP? What is SUDEP?!

The barrage of online searches for information about SUDEP opened up a world we previously knew nothing about. The anger and frustration that followed this earth shattering news fueled the creation of The Patrick Ring Foundation – something positive had to come out of something so senseless. We hope to honor him and his legacy by the positive work being done through a foundation in his name to raise awareness of Epilepsy & SUDEP.

-Jennifer Murphy (Pat’s sister) & Family

 

 

Michael Thomas, aged 25

Michael Wellborn Thomas, aged 25

My only child, Mikey Wellborn Thomas, died Nov. 26, 2016, from sudep (sudden unexpected death of a person with epilepsy). While he lived with epilepsy for most of his life, it did not define him. He was an artist who painted every day. On his Twitter and Instagram accounts he told the world how much joy he got from creating art. In recent years his work progressed from working on canvases to working with other artists and photographers to paint on photos. People from around the world would send him their pictures for him to re-create as he saw fit.

Mikey loved his life, living in the Bucktown neighborhood of Chicago with four of his closest friends. “Chiller’s Paradise” was home to many a party, but now looks like an art gallery, with all its walls adorned with Mikey’s art.

As his mother, I never realized how friendly Mikey was. Most days he would come home from school, do some homework, go online for some video gaming and paint. He rarely socialized during most of high school. Yet, at his memorial, I met hundreds of people who were touched by his sweet life. Many of them had been his closest friends since middle school.

His kindness and friendship were evident in the people he touched after high school as well. Nearly every person he ever worked with came to his memorial to share a story about Mikey.

I remember one day when Mikey told me about some homeless people he passed while walking home from the hotel where he worked. He tried to save money, so he often walked home, even in the winter. He said he just couldn’t stand to see the suffering of a homeless man he often encountered, so he gave him his tip money, which was essentially all of his money. At least for one day, that person would suffer less. Mikey said he could always make more money later.

-Parents Janice Wellborn and Ross Thomas

 

 

 

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Nickolas Evan Acker, Aged 22

Nickolas Evan Acker, 22, of Saco, passed away peacefully on Tuesday, Dec. 27, 2016, after a joyful, festive weekend of Christmas celebrations with family and friends.

He was born in the Midwest and vacationed for many autumns and every summer in New England, where he attended camp and his Whitham family gatherings.

Together with his sister, Nickolas was home-educated for grades K-8 by his mother until they moved permanently to New England in 2009. He successfully transitioned into Northampton High School until his graduation in 2013, making high honor roll, playing varsity golf, and serving as the student teaching assistant in the chemistry department.

Nickolas attended Southern Maine Community College, studying liberal arts and computer technology, working in the IT department, and working as sports editor and photographer for The Beacon. He continued his undergraduate career at University of Southern Maine in Portland, earning his B.S. in business with an emphasis in political science and economics, toward an expected graduation in 2017.

A newly-elected member of the USM Student Senate, Nickolas recently was interviewed by The Free Press, expressing his intent for the development of a forum where students could voice their concerns about social, political, and cultural issues on campus. 

An avid fisherman, Nickolas was passionate about the rivers along the Maine coastal region, which he lovingly called home.

For many years, he gracefully and courageously fought to overcome the challenges of epilepsy, until the SUDEP event which took his life.

He leaves his mother, Robin Whitham Acker; his stepfather, Stratton McCrady; his sister, Kiersten Louisa Acker; his step-brothers, Ned McCrady and Andrew McCrady; and many, many cherished uncles, aunts, cousins, dear friends, and valued colleagues who will miss him tremendously.

His extraordinary goodness and decency in the example of a quiet life, well-lived, gave inspiration to everyone in the world around Nickolas each day and will not soon be forgotten.

-Robin Acker (Nickolas's mother) 

 

For more stories, click here to visit the SUDEP Institute's "SUDEP Stories".