SADS Foundation :: Sudden Arrhythmia Death Syndromes Foundation

View the Ryan Sherwood Memorial Fund Page

Ryan M. Sherwood died Wednesday, Oct. 7, 2009, at his home. He was 24. Ryan was born in New Brunswick, New Jersey. He was a Ship Turbo Mechanic for ABB in North Brunswick and was a lifetime resident of Somerset.

"Sherwood" was a loyal friend to many, an avid car enthusiast and had a great devotion to animals. "Rye" was also devoted to bettering mankind through his volunteering. He was a previous member of the Millstone Volunteer Fire Department and spent many months volunteering after Hurricane Katrina ravished the South. 

He is survived by his parents, Jeff and Penny Sherwood of Somerset; his twin brother, Tim; his sisters, Meaghan and MaryKate Sherwood and his dog Nine.

View the Frank Keitch Memorial Fund Page

  February 9, 1947 – February 20, 2010

Frank was aware of his Wolff Parkinson White Syndrome since he was a senior in high school.  He collapsed in the end zone after scoring a touchdown for his high school football team.  He recovered and medical tests revealed WPW Syndrome.  

 In recent years, he had not had any triggers/attacks of his WPW.  However, on Monday evening, February 15, 2010, Frank helped someone push their car out of the snow.  He did not even know the people he was helping.  He felt his chest and neck tighten but he believed he would be able to calm down and get back to normal, as he had been able to do this in the past.  This time was different.  Frank and his wife Kris went to sleep on Monday night.  Kris woke up about an hour later to Frank gasping for air and non-responsive.  She immediately contacted 911 and the paramedics were able to get a faint pulse back, but Frank never regained consciousness.  Further medical tests showed Frank had severe irreparable brain damage.

Frank passed away Saturday, February 20, 2010, while surrounded by his family.

Frank was a very generous and caring man as demonstrated by his willingness to help strangers push their car out of the snow last Monday night.  His life was centered around his family - his kids were his world.  Frank was bigger than life and his personality was the kind that people always wanted to be around.

He is survived by his wife of 33 years, Kris; son, Kent (Kylie); and daughter, Kaleen.

View the Shawn DeVries Memorial Fund Page

On September 10, 2008, my wife Shawn Marie DeVries passed away from Arrhythmogenic Right Ventricle Dysplasia (ARVD). She was only 35. Technically ARVD is not considered a SADS disease but very closely mirrors those in the symptoms.

Shawn had a great love for kids – she valued her time with her nieces and nephew and spending time with them always brought out the kid in her. Shawn’s two other loves were animals, we had 3 dogs and 9 cats that found their way to our home. Her other love was the New York Yankees so much so that one of our dogs was named Jeter. We attended baseball games whenever the Yankees came into the Baltimore area and her claim to fame as she used to say was wearing all her Yankee stuff to Fenway Park when we went to see the Yankees play the Red Sox there. When we were moving to Boston Shawn lost sleep worrying how our dog Jeter was going to be able to survive in the middle of Red Sox Nation. Turns out - they both did fine.

This past summer to help in my recovery from Shawn’s passing I toured the country and attended a baseball game in all 30 MLB ballparks. I was fortunate to come into contact with Laura from the SADS Foundation (www.StopSADS.org) because of my travels. I have learned that there are so many others out there like me searching for answers to how we could have prevented the passing of our loved ones.

Over the past months I have been asked frequently what I am going to do for an encore. Well I have decided to tour the country again this summer and attend a game at all 30 MLB ballparks only this time the trips are not about me but about getting the word out about awareness of SADS. I have spent many hours reliving the past and saying what if I would have done this or that – what I have learned is that you really can’t what if the past but you can what if the future. This summer I will be able to combine Shawn’s love for children and her love of baseball to spread awareness and raise some money for the SADS Foundation.

Please check out my website 30ballparks-in-1season.com. My 2010 schedule is posted on there and if I happen to be in your area I would love to have some company at the game.

Sincerely,

Bob DeVries

February 15, 1982 - January 31, 1998      

View the Brian Price Memorial Fund Page

I remembered the story well. Though small and inside the newspaper, it was the sort that seizes a parent's heart. "Boy's death at theater unexplained," the headline said. The sudden death of a 15-year-old Dallas student while he watched a movie at the AMC Grand theater remained unexplained Tuesday . . . ."Brian Price was found dead in his seat at the Grand about 10:15 p.m.Saturday, with no obvious signs of trauma or foul play, according to a Dallas police report."

 Many must have read that Feb. 4 story and rolled their eyes. Surely drugs or alcohol were involved, they thought.

Maybe parents needed to believe that. Good kids don't simply die in a theater seat, we consoled ourselves. But that's exactly what happened.

Brian Price - gifted student, football captain, tournament chess player - put his head down at the start of Spice World and died. And a medical mystery began.

"The friend who was with Brian thought he had just fallen asleep," Brian's mom, Kathy Price, said. "He had gotten up early and played in a basketball tournament in Fort Worth that day, so it seemed entirely logical." When Brian didn't respond to a nudge, the friend went for help. All efforts to revive him failed. Even when all the tests were done, the medical examiner could not tell Kathy and Lee Price why their son died. "That's such a strange phone call to get: "Your son was perfectly healthy.' "

 Clues start to surface. It was two months before the mystery began to unravel. Kathy watched a TV news program about sudden deaths in young people and learned of something called Long QT Syndrome. It's a genetic abnormality in the heart's electrical system that can cause death in an instant, often when people hear a loud noise or as they're roused from sleep. It is identified by a longer interval between the so-called Q and T waves on an electrocardiogram.

"I watched that show and said, "That's it,' " Kathy recalled. "I just knew that's what had happened to Brian." The program said there is often a family history of sudden deaths before 40.

Kathy began to think back. Yes, years before, there had been an uncle who died at 19 on a basketball court. "Everyone assumed he hit his head when he fell," Kathy said. And that uncle had an uncle who had died in his sleep at age 32.

Another relative had been cut from the military because he kept fainting during exercises. Unexplained fainting spells are a warning sign of Long QT Syndrome. 

Brian's cause of death was confirmed, but any relief the Prices had in knowing what happened to Brian was replaced by terror that the genetic condition might affect their other two sons. It was a tremendous relief when electrocardiograms showed that Justin and Kevin do not have the syndrome.

Getting the word out.

Now that they know what happened, the Prices are working with friends of Brian's on a new project - spreading the word about Long QT. Each summer, Brian had participated in an enrichment program for gifted students from Catholic schools around the area. This summer, students in the DECATS program are honoring Brian by mounting a Long QT awareness campaign. Reporters have been called. Lectures have been scheduled. A TV public service announcement is in the works. Sarah Shotland was Brian's girlfriend and works in the DECATS program. She said, "It's amazing. This kills as many as 4,000 people a year, and no one knows about it."

 Maybe the best news for those with Long QT Syndrome is that common heart medicines called beta blockers almost always fix the problem. By all accounts, Brian Price was a great kid. And we're all still learning from him.

The hardest lesson may be that great kids sometimes simply die.

Jordan Nichols and his father, producer Jackie Nichols, relax at the new Playhouse on The Square. The young actor, who survived a near-death experience brought on by Brugada Syndrome (a SADS condition), says his dad's dedication inspires him to go on: "No matter what happens ... you always have to love what you're doing.''

View the Justin O'Meara Memorial Fund Page  

As we start to remember the good times we realize there were not enough, a life taken way to soon.. but Justin's death is going to save lives...

My gorgeous big brother Justin, fell asleep to not wake up on September 6th 2009. Through this hard and hurtful time we have had our friends and family by our side, Justin was the most kind hearted, big souled person you would ever meet and now in his death I will fight for SADS awareness everywhere. I miss him with all my heart every day and hope that with his death I have learnt the strength in ones own control and how to better yourself in many many ways. Justin was 25 when he died peacefully in his sleep and he will never be forgotten, as christmas nears we remember the good times, the bad times and the ugly times...you will be forever missed, forever loved and never forgotten.  May you Rest In Paradise forevermore.  Love always,  ur baby sis xo

Katie

Jordan L. Tucker, age 18 years and 5 days, of Cloquet, passed away unexpectedly in his sleep early Saturday, November 15, 2008 of a previously undetected heart arrhythmia (a SADS condition). He was born November 10, 1990 in Duluth. Jordan attended Churchill Elementary School, Cloquet Middle School, and would have graduated next spring from Esko High School. He was an honor student with a passion for fishing and hunting especially around Lake Vermilion where he had many "secret" walleye spots. Jordan loved soccer and was named all-conferences goalie and played in the all star game this fall. He also was an excellent youth soccer referee.

 Brittany Valene (1996-2005)  was born on February 17, 1996 as a young, happy, and vibrant young lady.  Over her years, Brittany made many friends and touched many lives.  She was always willing to lend a helping hand, pick those up who had fallen, and smiled at everyone she made contact with.

In Loving Memory of My Children Jimmy and Chrissy

I had no idea what LONG QT Syndrome was until May 2003. I was ten years too late to save my son and ten months too late save my daughter!  My Mom was taken to the hospital for what we thought was an anxiety attack; she was having rapid heart rhythm and fainting spells. She was diagnosed with Long QT, a rare and hereditary heart disorder that can only be found when you are alive.  This doesn’t show up in autopsies. It is commonly misdiagnosed as epilepsy.

In July of 2008, Red was diagnosed with Long QT Syndrome. He was getting a sports physical when his primary care physician thought they should have his heart murmur checked out. He had an EKG and the doctor said it looked like he had bigger problems than the innocent murmur. The next week, he had a stress test and echo cardiogram. Red was diagnosed with Long QT Syndrome.  Red is an extremely active, sports-oriented young man, and this diagnosis is causing some big changes in his life. His family has started a blog to chronicle his journey.  Please visit it: http://www.stephonpink.blogspot.com/  

1970-2005

     Windland Smith Rice was a consummate nature and wildlife photographer, avid hiker, marathon runner, and more importantly a loving mother of two boys, ages six months and two years.  Wendy, as her family called her, was a healthy, extremely active young lady.  A picture perfect example of health…or so we thought.  On May 31, 2005 this beautiful and beloved wife, mother, daughter and sister passed away in her sleep from Long QT Syndrome Type 2, a disorder of the heart’s electrical system which is often misdiagnosed and in many cases fatal.

View the Jesse Smith Memorial Fund Page

January 17, 1982 – May 21, 2003

On the night of May 20th, 2003, our son Jesse came home after working a full day at Pro-Business Payroll Services in Bothell, WA.  He had dinner, laughed and played cards with friends, kissed his mom goodnight and went to bed. Jesse’s car was in the shop, so a friend offered to spend the night and drive Jesse to work the next morning.

View the Cynthia Dailard Memorial Fund Page

Cynthia Dailard, a beloved wife and mother of 2 daughters, and a senior public policy associate at the Guttmacher Institute passed away on Dec. 24, 2006 after suffering cardiac arrest as a result of previously undetected Long QT Syndrome.  She was 38 years old.

Stephanie Mejias, an elementary education and psychology major, passed away on July 27 near her home at Overlook Hospital in Summit, N.J. Mejias was afflicted with a condition known as cardiac arrhythmia due to myocarditis.

Mejias suffered a cardiac abnormality which affected the rate of muscle contractions in her heart.  With no signs of fatigue or symptoms of any illness, Mejias was unexpectedly taken away from the ones she loved. She was 19 and would have been a junior this year.

  We became involved with SADS when our 19 year old son, Brian collapsed and died during class at MSU. He felt ill and asked for permission to leave to get some fresh air. He collapsed in a courtyard thatwasn’t heavily trafficked. He was not discovered for thirteen minutes and attempts to revive him were futile. He was pronounced DOA at Sparrow Hospital in Lansing. Our lives shattered.

Brian was always healthy, never a  broken bone and the autopsy could not find anything, but upon review of his medical history they read he had a fainting spell a year before where he was incoherent and taken to Emergency. In Emergency they tested him for numerous things, but never ran an ECG. After twelve hours of observation, he was released with low blood sugar as the diagnosis. We followed up with acomplete physical two days later and again no ECG was done The fainting spell was our warning; a warning that the medical profession discounted because he was a healthy youngadult.

Brian died from what they believe to be LQT, an electrical defect of the heart that can cause a very fast heart rhythm (arrhythmia) which leads to fainting and sometimes, as with Brian, sudden cardiac death. The irony is hat LQT is easily treatable with oral beta blockers, pacemakers, or surgical procedures, if diagnosed.

Dr. G. Michael Vincent began studying and treating patients with the LQT syndrome. He became frustrated by the number of young people remaining undiagnosed, untreated and ultimately dying through lack of physician knowledge or screening. He began formalized research and nationwide educational awareness to help stop the sudden cardiac death in young people.

In memory of Brian and all the other young people who have lost their lives to sudden cardiac death, won’t you please join us in helping SADS stop this silent killer.

With our heartfelt thanks,
Chris and Denise

February 2, 2007 3:45 a.m.: I woke up with a frantic twitch and a numbing, stiff arm under the weight of my body. I had only dozed off for a few lousy minutes but it felt like hours. If only the last 24 hours were a dream, I thought. The couch in the waiting area was uncomfortable and I couldn’t help but think of all the other people who had slept here before which gave way to a wave of nausea. I had no blanket and it was freezing. The  “timer” lights would not shut off and were bright as the sun on a summer day. But this was the dead of winter. As I lay there, I prayed to God to let my baby boy live. I missed my wife. We were not used to sleeping apart – especially under conditions such as this. I needed her to be here with me. All I could think about was how much she needed me to say, “everything is going to be alright” – but I couldn’t say that because I didn’t know. Yesterday, she gave birth to the most perfect baby I’d ever seen – no wrinkles or that alien-like look that newborns have. No, Danny was perfect. Well, at least on the outside. We didn’t know it at the time, but Danny was about to have many earthquakes behind the walls of his heaving chest inside his tiny heart. Torsades DePointes… what the hell is that? We found out the next day when my wife saw his heart-rate jumping from one extreme to the next, his rhythm looked like lightning bolts on the overhead monitor. Danny, however, was calm, sleeping, as a newborn should, deceptively peaceful. The doctor told us he was experiencing something called Torsades de Pointes, a French word, he said, meaning “twisting of the point”, a phrase used to describe deadly ventricular tachycardia – a sign that our little bundle of joy may have something we had never heard of  - Long QT syndrome.

I experienced Sudden Death 19 years ago and was in a coma for 3 days.

My fiancé, John, was a very happy and vibrant 38 year old man. He was a man who loved his children, his family, martial arts, and helping others. On July 1, 2005 we were granted the most precious gift when our son Keegan was born. John's face would light up whenever the kids were around and he fondly nicknamed our son Mr. Cutesy Pants.

The morning of July 20, 2005 started out like any other. John had gone down stairs to check on his mom, went outside, and than came back upstairs to the bedroom to watch TV. He didn't really say much, never complained of feeling sick or anything. Minutes after getting back up to the room he was propped up on one arm on the bed watching TV. All of a sudden John made an awful noise (almost like he was gasping for air) and he fell onto the bed. Immediately I ran down stairs to tell his mom that John was not responding and that we needed to call 911. The emergency crews came and they worked on John for what seemed like forever. They left to take him to the hospital.

We all thought for sure when we met up with him at the hospital that they would have him stabilized, because he was a healthy young man, who never had any serious health problems. That was not the case, they had pronounced him dead. An autopsy was never performed but due to the quick onset of things they had named the cause of death Ventricular Fibrillation.

I would really like to add my brother's story to your website.  His name is Jason Ashe and we live in Trinity, North Carolina.  He is 22 years old and before May 2, 2006 was in perfect health condition.  He played football ever since he was little and even played college football.  He is an avid deer hunter and goes hunting as much as possible!  He has never had any health problems and has always been seen as a strong young man.  He weighed about 280 pounds and was planning on going to try out for a semi-professional football team.  He experienced sudden death on May 2nd, 2006.

Community 'Kick Off' Speech

I have a great friend, whose father climbed all the high peaks in Europe, South America and those in our continent. When he settled down and married his family quickly began to grow-ended up with 7 kids-my friend David being one. Now, when you have a family of 9, you find affordable ways to have fun together-so this family learned to hike. David's dad was also a founding member of REI, and required that each child carry a backpack equal in weight to his age. They had to carry the ten essentials-matches, compass, map, etc. And, David's father always made his kids take along several dog biskets. He figured that if a child got lost he could always eat a bisket if he got hungry enough, but they were so distasteful that they didn't disappear like the chocolate and raisins he had given them earlier as emergency food. To this day, if you open up David's glove compartment in his truck you will find several very hard dog biskets inside, just in case.

I had no idea what LONG QT Syndrome was until May 2003. I was 3 years too late to save my son and 10 Months to late save my daughter! My Mom was taken to the hospital for what we thought was an anxiety attack; she was having rapid heart rhythm and fainting spells. She was diagnosed with Long QT, a rare and hereditary heart disorder that can only be found when you are alive. This doesn't show up in autopsies. It is commonly misdiagnosed as epilepsy. 

Oct. 24, 1994-May 3, 2003

My daughter Mary was a happy, healthy 8 ½ year old. She was in second grade and very involved in school and church. She loved reading and helping her friends and teachers in any way possible. Mary played soccer, baseball, sang in the church choir, and played in the church bell choir. She was also a very talented artist. She loved to draw and paint, and had been to art camp for the first time the previous summer.

A Life Saved, A Life Given

The Day was beautiful and sunny. It would normally have been just another summer day, but it was special because it was the day of my baptism. How little I imagined it would be the turning point of my life.

My life began on January 30, 1979, in Anchorage, Alaska. My parents, Richard and Mary Lynn, moved to Walla Walla, Washington, after I was born and built a beautiful home in the country. Growing up I played in the creek on our property, rode horses, played the piano and had many times playing with my two younger sisters, Talitha and Sarah, on our farm. On august 19,1989, everything changed.

Making a difference that would affect many people is something I have thought would be exciting to do. I never dreamed I could make this happen as a 16 year old.

It all started at my sophomore meeting when my high school counselor showed my mom and me a history of all my grades. It not only had the grades that would show on my report card, but also the grades I had received on semester finals. Everything appeared to be normal, but then we noticed something strange. I had gotten a "D" on my semester final, a fitness test, in Freshman Physical Education. Part of the test was a timed mile and a half run, and students were graded according to their time. The more time I took, the lower my grade would be.

About a year after her father's sudden death, Toni, her brother Jimmy and I moved to a small duplex at the edge of Peachtree City. Our house had been sold and once Jimmy graduated from high school we were planning to move, probably out of state. The morning of May 19, 1988, I called Toni to get ready for school. I knew she had not been feeling well the past few days. She had complained of a sore throat, and was stressing over her final exams. I was sitting in the kitchen of the small duplex when I saw Toni come out of her bedroom and go into the bathroom. As she reached to turn on the light, she quietly collapsed to the floor. Our German Shepherd heard her fall and headed toward the door. When I saw her, she was unconscious on the floor, her skin an all too familiar color. Her father had passed out several times prior to his death, so when I could not rouse her, I screamed for Jimmy and dialed 911. I then called our pastor and asked him to start a prayer chain.

Tom was diagnosed with LQTS when he was 9 years old. With no family history of sudden death, the news was quite a shock.

Tom’s medical history has been very eventful. The day after returning home from a church youth ski trip, he had a full cardiac arrest. Our minister brought pictures from the trip to the hospital. There was Tom with his friends in a victory stance on a high peak It was hard to believe that our son, in the hospital bed on a vent, had been celebrating life on a mountain top just a few days earlier.

Sept 23,1996-Jan 5, 2000

Let me start this by telling you a little bit about Jo. Jo has been a very sport-affiliated child. He has played baseball since the age of 5, softball since the age of 7, and Pee Wee football since the age of 9. He is very athletic. He has played in USSSA World Tournaments and ASA World Tournaments all over the world and holds many first place honors. He got to Jr. High and decided to play football. I was all for it.

A Good Friend

I will never forget the day my dear friend, Ann, called to tell me that her daughter Kaitlin had been diagnosed with LQTS. She had been hospitalized after fainting at a track meet and was diagnosed with the disorder. Ann tried to explain it to me—but I ended up spending a lot of time on the Internet reading about it in order to understand it more completely. When her other children were tested, it was discovered that her son Ryan also had LQTS. After crying with Ann and for her beautiful children and thanking God that they had been diagnosed before something worse had happened I began to feel very helpless as a friend.

Everyday we are faced with challenges that we must overcome, but are we really ready to face death? I was definitely not!

In today’s busy lives we have to be open to the unexpected and rise to the challenges that come our way.  I can assure you that my overflowing calendar had no room for the news of being diagnosed with LQTS in June of 2000.  As a mother of two teenager daughters, newly enrolled in an MBA program and an executive in a thriving manufacturing business, I was already scheduling back to back.  From dawn to dusk I was on the go….

The Blue Ribbon Award

Strong spirit, kind heart and a clear vision of the future are three phrases I would use to describe my oldest daughter, Jenna.  Her strong spirit was not shaken when diagnosed with LQT syndrome in the fall of 2001 and it was her clear vision of the future that allowed her to participate in the decision to have the AICD implant.  Jenna has never let her diagnosis of LQT or her implanted defibrillator slow her down. 

July 26, 1986-January 17, 2002

  A Beautiful Heart Stops Beating

On January 17, 2002 after completing the first semester of sophomore year, our loving fifteen-year-old son, Adam, an honor student at Grayslake Community High School in Illinois, died of a heart condition called LQT Syndrome. Around 4:00 P.M., his mother, Colleen, went out with our son Andy. When she returned an hour later, she found Adam lying on his bedroom floor. She immediately called 911, started CPR, and administered our home defibrillator paddles. Every effort to save his life failed.

January 6th, 2002 was a red-letter day on the Augenblick calendar. It was the 80th birthday of my husband David—my husband of 55 years and the devoted father of our four children. It was the perfect occasion to gather the family to celebrate this milestone. Preparations had begun six months before, therefore all the children, grandchildren, sundry relatives and many friends were able to gather and toast his health and vigor.

I would never have heard of Long QT syndrome if my son didn't die on December 22, 2001. He was just 25 years old. He was still living at home and attending WSU. He was a senior. He had a 3.0 grade point average. He worked nearby at Mr. Goodcents sandwich shop.