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: mailto:info@sudepregistry.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

 

Dean Geiser, Aged 63

At 63 years old Dean was a retired pharmacist who enjoyed reading, classic rock, and the Baltimore Ravens. He was a family man with two adult children who cherished him and a wife who adored him. His dry sense of humor was beloved by all.

He started experiencing nocturnal grand mal seizures at the age of 27, shortly before we were married. As a health care professional he did as much research as he could as to possible causes and treatments (this was prior to the internet!) and found there was very little information out there about his condition. After all, he was told repeatedly, this was a benign condition and the best kind of seizures to have since they didn’t affect his driving and he was in a safe place when they occurred - in bed. Over the years with medication he suffered a seizure only every 1-3 years. He took many tests but no one was ever able to determine a cause for his condition. 

The night he passed all the health care professionals in our town were not sure what happened and labeled cardiopulmonary arrest due to arteriosclerotic disease as the cause of death, even though I clearly told them of the multiple clues of seizure activity. He also had no history of heart problems. It wasn’t until I did research on my own that I learned of SUDEP. No one had ever discussed the possibility of it beforehand with us. Dean had previously said he wanted his body donated to science upon his passing but had not as yet taken the steps to make that happen. He was cremated without an autopsy. I hope that by telling his story more people will become aware of SUDEP so that the scientific community can make progress on how to prevent it. Dean was unable to donate his tissue to be studied, which he would have gladly done - had he only known.

-Wife Cheryl Geiser

 

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Shani Coleman, Aged 27

Shani Coleman was a unique young lady who did not allow epilepsy to stop her from living a full productive life. Shani suffered with seizures from adolescent until the age of 27 at which time Shani died due to a fatal seizure. Shani was able to overcome many personal challenges yet she met all of her challenges and endeavors with determination and courage. Shani was a perfectionist who gave one hundred percent to everything she was involved in. Shani had a kind kindred spirit she loved to laugh, have fun and help others. Shani was a beautiful young lady who was full of poise and understood what it meant to embrace life to the fullest. Shani loved to write creative poetry and prose, paint, as well as create collages and jewelry. Shani was an exemplary student who received several scholarship awards and graduated with Honors in June 2016 with her Bachelor’s Degree in Journalism and Communication from Baruch College. As a young woman she enjoyed working in the community garden, feeding the homeless, mentoring, and creating community murals like “The Vision of Growth.” Shani was also adventurous, her favorite shows were Seinfeld, Martin and Dog the Bounty Hunter. She loved to rollerblade, ride her bike, take walks on the Coney Island boardwalk to see the sunset & even flew an airplane under the guided instruction of a licensed pilot of course. Anyone who had the pleasure of knowing Shani was fortunate to know a very special young lady who exemplified what it means to be a committed loving trust worthy person. All of us who knew Shani miss her dearly. I would like to encourage other families of color to consider participating in research such as SUDEP, such research can only promote a positive outcome in the medical field as we use our collective efforts to investigate and share vital information that can help to prolong and save precious lives.  

- Shari Robertson (Shani's mother)

 

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Janette Gable, Aged 18

It’s still unreal to me that my daughter who was diagnosed with epilepsy at the age of 10 passed away from SUDEP on November 13, 2016. We had celebrated her 18 th birthday just the month before.

I had stumbled across a short article about SUDEP two years prior during one of my many searches for any information relating to Janette’s intractable epilepsy. She was having more frequent seizures as the years went on and additional types of seizures started occurring.

I miss her sweet smile, her sense of humor and wit, her loving heart. Janette had goals she had set for herself and was accomplishing great things despite living with epilepsy. She was a senior in high school. A feat I admire in itself. The medications made it difficult for her to concentrate and caused a number of other learning challenges. She was ready to take on adulthood, independently. She got herself a part time job; she looked forward to her senior prom and graduation. She was considering moving from the east coast to Southern California, a place she truly loved. The vibe, the culture, the beaches, and the climate- she loved everything about it. Her family roots were in SoCal and she definitely felt right at home whenever we went to visit family and friends there. Janette was soft spoken with beautiful long dark hair and soulful brown eyes. She liked to draw, read, and she had a very soft spot for animals. She had a great laugh and the funniest sense of humor. She absolutely loved music and her baby nephew Joey. We spent a lot of our free time together, watching scary movies or grabbing coffee out to catch up with each other about our week. I was fortunate to have a teenage daughter who told me she loved me every single day. As her mother, her caretaker, and her best friend, I can’t begin to express the sorrow and heartache I live with every single day since I found her. SUDEP took my precious girl; I miss her every second of every day.

She is survived by her father John, who absolutely adored his only daughter. She is also survived by her brother Joseph and his wife Alyssa. There were many game nights, holidays, jokes, and love shared by them. Janette loved playing with her baby nephew, Joey, and reading Dr. Seuss books to him. My heart breaks for her sweet boyfriend Grady and her best friend Clementine.

I’m hoping my beautiful daughter’s short life was not in vain as I donated her tissues and samples to NASR. I have high hopes that they will find something that may help other patients or neurologists in any way possible. I can’t forget to acknowledge the Epilepsy Foundation of the Chesapeake Region. They were key in helping me with information, programs, and resources.

Please educate anyone you know who has any kind of seizure disorder about SUDEP. It’s unfortunate that SUDEP isn’t a standard conversation in the doctor’s office. Not many people realize that there is a very real risk that your child, spouse, sibling, grandparent, friend…can die from this.

Margaret Gable (Janette’s mom)

 

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Cole Stewart Brecheisen, Aged 18

Cole was the oldest of our three children.  He was a very bright and inquisitive young man.  He loved computers, driving and almost anything to do with cars and engines.  He dreamed of designing car engines that would be faster.  He had a wonderful and caring heart and would do anything for his friends or family.  Cole was a high school senior in March 2016, when he had his first seizure at work.  The emergency department at our hospital decided he had fainted.  We knew this was not the case so we obtained the security camera footage, at his place of work, that showed him having the seizure.  We took this to an Epileptologist and he diagnosed Cole with Localized Focal Motor Epilepsy.  We were told that "there were far worse things in life" and that he would be just fine.  Cole began taking Keppra immediately and seemed to be doing well.  He said he felt strangely very often, but wasn't sure what it was.  He also complained of poor memory.  He was keenly aware of his mind and his body and the different feelings he was having.  Things seemed to be improving, until late April when we awoke to him having another seizure.  His medication was increased immediately and again he was doing well.  He would have small breakthrough seizures, but they would not progress to a full seizure.  He went seizure free for some time and went on a mission trip with our church to build homes in Piura, Peru in the beginning of July, 2016.  Cole regained his ability to drive in late July and was thrilled.  He spent the whole month of August driving as much as possible as well as beginning classes at the Community College near our home.  He was terrified of having a seizure in front of someone so this limited what he did.  He had a couple of larger breakthrough seizures and we told the Dr. about them.  The Dr. seemed to think this was fine and he didn't need to increase medication unless they got worse.

On the morning of August 28, 2016 we went to wake our son and found him lying face down in his bed.  SUDEP had claimed his life in the middle of the night and we hadn't known.  If Cole had been told of the risks, he might have been more careful about his diet, sleep, and increasing medication.  He may have been worried, but we will never know if it would have saved him or not.  We enrolled him in NASR in the hopes that something can be learned from his case.  Our lives are forever changed by the loss of our beloved son.  We can only hope something can be done to prevent this from happening in the future.

TJ and Leigh Ann Brecheisen (Cole’s parents)

 

  Nicole Marie Orleans, Aged 25

Nicole Marie Orleans, Aged 25

Nicole Marie Orleans, Aged 25

My beautiful daughter, Nicole Marie Orleans, Passed away on September 1, 2017. She did not show up for work that day, and was found unresponsive in her apartment.

She began having “petit mal” seizures when she was in her teens. At one point, she told a doctor that she had been accidentally hit in the head with a heavy oak door when the person in front of her didn't realize that she was behind him. Her first “grand mal” seizure occurred the day after Christmas 2012. She was 21. We went to a series of visits at doctor's offices and hospitals, and she was put on Keppra and Topiramate. The combination was not working very well, so they switched her to Keppra and Vimpat. With that combination, she slept better, lost a significant amount of weight, and remained seizure-free for quite a while.

Nicole attended LVA as a Choir major. She had a beautiful voice! Once the seizures started, however, her tongue was damaged to the point that she had to give up hopes of a singing career. She instead wanted to get into the medical field, and was working for a health care company as a technical representative. The Vimpat was working great, however, her health plan at work would not cover the cost. The seizures became more frequent.

Nicole's friends had a memorial service for her, and her company planted a tree in her name, with a plaque, at the West Flamingo Park in Las Vegas. If anyone would like to learn more about Nicole, her Facebook page is a memorial to her now, and is public.  She loved going on road trips, she was an avid Star Wars fan, she loved all living creatures, fish especially, and since her initials were NMO, her nickname was “Nemo”. Her friends knew they could always count on her, she was kind and generous, loving, understanding and supportive.

I was able to help the NASR retrieve samples of Nicole's brain tissue and blood left over from the autopsy. I hope it helps their research. I miss her terribly. 

Lillian Orleans (mother)

 

 

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Emily Redosh, Aged 28

Emily Redosh was born in Philadelphia in November, 1989.  She moved to Denver with her parents when she was just shy of two.  Emily’s passion, from a very early age, was dance.  Emily began taking a “pre-ballet” class at her preschool in Denver, which grew into after school classes four days a week.   After her sister Lauren was born and the family moved to Golden, she danced ballet until her death.  Over the years, she danced almost every part in the Nutcracker, earning the coveted role of Clara when she was 15, and the Sugarplum Fairy upon her return from college. 

Emily attended Lakewood High School and received a BS from the University of Arizona.  While at U of A, she traded her pointe shoes for ballroom heels and won numerous medals for the U of A ballroom team at competitions around the country.  After graduation in 2012, she balanced work at Colorado Physicians Health Program with her love of ballet and ballroom dance, along with a busy social schedule and her eagerness to travel the world.  She even began to appreciate the Colorado mountains as she joined her dad to hike a couple of 14,000 foot mountains and accompanied her friends and family on hiking and camping trips.

Emily passed away suddenly on December 2, 2017 from SUDEP.  She had been diagnosed with epilepsy at 7 years of age; her tonic clonic and absence  seizures were generally well-controlled with medication, averaging one seizure per year when she was sleep deprived or missed a dose.  She rarely spoke of her epilepsy, which was a bit disappointing to her neurologist father, as she was determined that it wouldn’t define her.  She was a compassionate young woman who always had a kind word to say and an open and loving heart.  Upon her death, her family asked that contributions be made in her memory to the Denver Ballet Guild, and to the Chelsea Hutchison Foundation, because of the work the organization does to raise awareness of SUDEP and to help families with members suffering from epilepsy.  Emily’s family is honored to be able to pay Emily’s short life forward through participation in the SUDEP Registry.  Emily would be deeply touched to know she has had some part in bringing comfort and peace of mind to those who also suffer from epilepsy.  In that small way, Emily dances on.

Douglas Redosh (Emily's father)                                                                                                    

 

Jacob Toews, Aged 15

Our son, Jacob Wade came into our home as a 4 month old foster baby along with his older brother and sister. Close to a year and a half later we were able to adopt this sibling group and call them our own. He was the only ‘baby’ we had.

Jake, which is who he was to us and all his friends, was a self entertainer as a child and even into early teens. He was very inventive with the scraps and unwanted item here at home, like empty cardboard boxes, tin cans, etc. Often using them to make trailers for semi trucks that he would ‘drive’ when completed. We saw his love of drawing come to life as he used paper after paper to get just the right perspective of his trucks. One day he came to me and said, “See, I figured out how to make it look 3D!”

Somewhere between 1 1/1-2 years of age Jake began having absence seizures although at the time we were not aware of what was going on. At 12 he had his first grand mal when we finally started doctoring. We were never given a diagnosis on exactly where or what brought his seizures on other than they were generalized and localized in his brain. He tried numerous anti-seizure meds and they would work for a time then quit. He went through 2 video EEGs and MRIs with and without contrast, a hospital stay or two where he went through medication changes. Nothing we did seemed to control his grand mal seizures which were occurring on an average of one a week 2 days before he dead we had been to the neurologist and she told us that we were running out of options with medication. There were 2 things left that she suggested we could try yet—CBD oil and VNS.

He was 15 when he died. He was found in bed on the morning of Feb. 22, 2018, face down. By all appearances to us, his death was caused by some sort of seizure activity as his fingers on both hands were curled and his face was somewhat screwed up. We were told by officials they believe he passed away shortly after he went to sleep the night before.

Jake’s dreams for adulthood were big—wanting to be a volunteer fireman, and a pipeline welder, also having a job to one day support a wife!!

-Christy Toews (Jake’s mother)

 

Tainairy Liz Cruz, Aged 20

During the last 19 years I described my self as an entrepreneur and  a mom. I really believe in God but in the past months I have doubt it of Him and everything I believed in my life. I being tested by Him and I am mad as hell with Him but I still love Him.

My family and I came from Puerto Rico  to the USA in December of 1996. I was student and a dreamer at that time. As child, you have a lot of dreams but life have a plan and a mind of her own. In June of 1998, I stopped being a child and I became an adult, my eyes opened and life stopped being just a dream and reality sneak up on me. I matured in a matter of months because life gave me the most deep, gratifying, and selfless job in my entire life, I became a mom. I had a baby  girl which my mom and I named Tainairy. She became my strength, my reason to live and  my everything. Financially at home, things weren’t easy but I had everything in the world because I had her, a job, loving parents and a reason to do better in life.   I was a single mom at the age of 21 in New York but happy.

My parents were my strength and support. They helped me raise my child and take care of her while I work. Tainairy was a chubby kid, with brown skin, football shape brown eyes, big cheeks, curly hair, and a beautiful smile. She was a smarty pants with a big mouth just like her mother. I was living only for my child, my only child and in my child’s eyes I saw love for me.

My mother, the person who raised Tainairy and who she used to call her mom passed away when Tainairy was 13 years old. Their relationship made me jealous at times I must admit. My mother was a strong woman and passed away from a heart attack but before that she survived a lung failure, depression, diabetes and she kicked cancer’s butt twice. She was the pillar of the family and for Tainairy’s she was her bible.

Tainairy’s life changed and the sweet child became bitter after my mother’s death. The combination of her grandmother’s passing, bad company, adolescence and lack of parents supervision made a huge negative impact in her life.  She dropped out of school, experimented with drugs and she wild out.  Her teens were bad really bad and at the age of 15 my daughter got pregnant. She decided to have the child and I can lie, I cried for days. I was more scare for me than for her. I felt like I  was failing as mom and now on top of all I have to support another child. It was difficult times and she made me the youngest grandmother in history. I had to accept being a grandmother and to be honest I just embraced my new role in life. Tainairy became a mother at the age of 16 and my granddaughter Catalina was born. Catalina is a beautiful and truly a gift of God. She is doll with big eyes, curly eyelashes, big cheeks and huge personality. The bitter daughter of the teens was gone. Motherhood returned me my daughter. The loving and caring Tainairy from the childhood was back.

Tainairy obtained her driver’s license. She went back to school finished her GED and started looking for colleges. She wanted to be a Doctor. Her cousin was her best friend, Kanye and Drake were her men, I was her idol and her daughter was her world. She was an activist from her cell and she wanted to drive to Canada with her cousin. She also wanted to buy a house with pool house so I can live my life from her backyard. She was coming out her shell and wanted to live life to the max. Like me, motherhood made her an adult and to be honest she was the only adult in the house at this point. She was the woman in charge. So I thought, I only have to worry about providing for them and take care of bills and to  continue growing my new business because she had my back and everything is cover and under control. Damn! Live was great and I couldn’t wait to look forward to our future. What a fool, I am!

At the age of 18, my daughter started having seizures and was diagnosed with epilepsy. She started taking medications. After another seizure at the age of 19, my daughter goes to hospital to get check out and a doctor at the emergency decided to do a MRI and she was diagnosed with an AVM malformation in her brain. She waited for the hospital to give her appointment with the neurologist after so many calls  and going to hospital and waiting to see a neurologist at the hospital. We decided to seek another doctor outside the hospital. The new doctor initiated some tests to see how they were going to target the AVM that most likely she had since birth and it was threating her life.

At the age of 19 on January 6, 2018, on a Saturday morning I found my daughter dead on her bed. I was in my room sleeping when half asleep I felt like was shocking in my sleep. I fully woke up worried I went to her room and saw her lying face down to the bed and I called her name at the door of her room. Like any mother I was calling her scare inside but not to laud. Because, I did not wanted to bother her and get her mad. She hated for me to wake her abruptly but my mother intuition was telling me that something was wrong and feared that she was dead. It was that same feeling when you fear when they are babies.  I continue calling her and yelling her name, calling her but since she did not answered me I approached her bed. The baby got up walked to the room and got on the bed next to her mom and she also started calling her…. mommy. I nervously moved her body face up, to help her breath. I started yelling her breath Tai, Breath, Tai Breath. I Called 911 while the baby hold the phone for me.  I stated doing compressions and the baby was yelling….. breath mommy, breath! While I’m on the phone with the operator I remember telling them, she is dead, she is dead.  The paramedics from the fire department came to my house I checked her and they confirmed me that she was dead and I finally absorbed reality and noticed what it was happening around me and at that moment I finally crumbled in tears, felt my spirit abandoning my body and I felt sorrow and emptiness inside. I didn’t care that I had like six guys around me and I was just in my  bra and underwear with a  tank shirt.  I was  a really a mom in full force. I felt like my heart was a dark whole that it was swallowing my soul gradually. In that moment I was really gone. I have never loved someone in my entire life like I love her, she was my best friend, my support, my greatest accomplishment, my only love, my daughter, my only child my world.

I know she left me a child as  a reason to continue living and as a reminder of her beautiful soul.  But like I tell everyone you cannot just replace a child with another child. It’s never going to be the same. Simply it’s a different person a different type of light in my life. 

It’s dark humor but between during the period of time that Tai was diagnosed with the AVM  and before her passing we joked about her dying and while joking about it because we thought that it would really never happen to her and she was going to get cured. It was Tai’s mechanism to cope with everything she was fearing and going thru. She prepared me  and gave me instructions for after her death with her jokes but no one prepared her. Doctors did spoke to us about the possibility of a rupture of the AVM but never about SUDEP. It was after her death that I found out about it. The medical examiner couldn’t explain to me the details behind about her death. They simply stated on her death certificate complications of an AVM. I visited my daughter’s primary doctor after her death and mentioned to the doctor that my daughter passed away during a seizure and she dismissed me by saying. “People don’t die of seizures.” The medical profession failed to their future colleague.

We need research it is more than 2600 Americans dying every year without a real explanation of how they died. Because SUDEP reminds a mystery without any real explanation. It’s sad that mothers like me continue finding their child dead in bed. Mothers and patients who are not properly informed by their doctors because doctors themselves don’t know about SUDEP. No mother have to fear when their child goes to sleep.

Life have a mind of her own and my faith is being tested and don’t know why. I just know that my daughter grew to be a strong woman and a life warrior. My daughter was capable to continue laughing and making me laugh while knowing that she had a ticking bomb in her head. She was the definition of a life warrior!  Be capable to live, laugh and dream like you are a kid, knowing that you may die at any moment and sooner that you expected.

My daughter knew she had an AVM an it was a possibility of death if the AVM ruptures but her  AVM never did. She had an epileptic seizure and passed away in her sleep and something it stopped functioning right or sent the wrong signal. What exactly? That is the mystery.

The present day definition of SUDEP is: Sudden unexpected death in epilepsy (SUDEP) is a fatal complication of epilepsy. It is defined as the sudden and unexpected, non-traumatic and non-drowning death of a person with epilepsy, without a toxicological or anatomical cause of death detected during the post-mortem examination.

The word complication in the death certificate of my daughter and on the definition  of SUDEP it’s what bothers me. I want to know what is that complication. I don’t want to find out after death, it is to late I want people to know while they are alive. What trigger’s it? What causes it? How to Stop and Prevent it but for all that we still need research. The brain and nerves are so complex and like the universe it still a mystery to explore. Please talk about SUDEP with friends and family. Just pass the voice and let the world know about SUDEP and is possible to pass away during a seizure while you sleep. We all experience seizure is just that we don’t notice them. We need more research about SUDEP because until the mysteries of the brain which triggers SUDEP get discover another 2600 Americans and 45,000 in the world yearly continue dying without a real explanation. 

-Glenda Cruz, Tainairy's mother