Paul Bryant	Adam Kausak	Jena Aaland
Joel Augenblick	Donna Giles	Karla Aaland
Kaitlin	Toni	Rachel Tomezek
Kellie Kotraba	Jo	Samuel Mitchell
Mary K Elizabeth Butt	Tom	Chrissy & Jimmy Brackett
Dr. Jones' speech	Jason Ashe

                                                    

 

Joel Augenblick

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January 6^th, 2002 was a red-letter day on the Augenblick calendar. It was the 80^th 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.

            The only sad note was the absence of our son Joel, who almost four years ago at the age of 46, just did not wake up one morning. No symptoms, no warning, just sudden arrhythmia death syndrome. The unexpected loss of a vibrant, healthy athlete—a sculler, a kayaker, a Macabee gold medallist—was overwhelming. He had recently seen the birth of his first child. She would not remember him at all. At age four, she now says “she has no daddy.”

 

            Time has softened the edges of grief, though Joel lives on in our daily thoughts. What better way to honor his memory than to turn to this happy occasion into an opportunity to ask our guests to forgo the usual gifts and instead, make a contribution to SADS. Its valuable research may some day help other parents avoid a similar tragic loss.

 

We hope that this story of a party held in Florida by Helen and David Augenblick inspires you as much as it did our staff.

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Adam John Kausak

July 26, 1986-January 17, 2002

A Beautiful Heart Stops Beating

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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.

 

Over 500 loving family and friends attended his wake and funeral. It was evident Adam impacted many lives in the 15 years that God gave him to us.  He will always be remembered for his openness and acceptance of everyone.

 

In August 1997 Adam experienced his first episode. Colleen, returning from a short errand, discovered him unconscious on his bedroom floor. Fortunately, she was able to bring him back. After numerous tests, an ECG revealed he had prolonged QT rhythm. He was placed on Beta Blockers and prevented from participating in sports.

 

When Adam was diagnosed with LQTS, little did we know, it would change our lives forever. Our entire family was tested and my son, Andy, and I were both diagnosed with Long QT syndrome. Colleen went into action to get awareness about this life threatening condition out. She still says: “Living with LQTS is like living with ticking time bombs.”

 

After Adam’s untimely death, Andy had a pacemaker defibrillator implanted on February 11, 2002. Our other nine-year-old son, Alex, who thus far is asymptomatic, will be going for additional testing.

 

Although we are grieving the loss of our son to this deadly condition, it is our family’s mission to make people aware of this manageable but potentially devastating syndrome. We are continuing to work with schools to obtain defibrillators and lobbying public officials to change sports physicals and to establish mandatory ECG testing on newborns.

Submitted by Donald J. Kausak

Adam’s father

 

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Jenna Aaland
The Blue Ribbon Award

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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.  At the tender age of 16 she is a beautiful young women who has experienced a heightened awareness of the world around her, the feelings of others and the strength of her determination.  She has accepted the changes in her life with poise, creativity and maturity beyond her years. 

One important aspect in the life of any teenager is their access to activities like sports.  Although Jenna’s thoughts of playing high school sports have been revised, she has found ways to be an active part, like managing the girls basketball team or participating in non contact sports like golf.  Her openness with her limitations has endeared her to the team.

Holding steadfast to her dreams, she plans on attending medical school and is contemplating pursuing a career in pediatric cardiology.  Rather than be a victim of the disorder, Jenna has chosen to turn it into a chance for personal growth and has emerged a victor.  She serves as a true source of inspiration for every member of our family, her school and community.  It is with great pride and respect that I call her my daughter.  She is truly amazing!

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Karla Aaland’s Story

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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….

Having lost my mother in 1971 to Long QT Syndrome, I resolved to make sure that my children grew up with a mother and to take on the mission of spreading the word of the silent killer—Long QT Syndrome.

In the Fall of 2000, I had a Guidant AICD implanted which has lifted the fear that many LQT carriers live under and virtually given me a new lease on life.  Secondly, my family’s story will be featured in their 2001 Annual Report.  This worldwide exposure will bring LQTS to the forefront and will serve as a solid kickoff for future speaking opportunities.

Back in the real world of day-to-day life my schedule is still full and the appointments are back to back—but my passion for spreading the news about LQTS takes top priority. Through speaking engagements and other press opportunities I hope to reach others who are unsuspectingly inflicted by the genetic disorder.

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Donna A.Giles

Simply A Miracle
 

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

I was a normal lively and energetic 25-year-old girl driving down the busy streets of Houston Texas when my life almost came to a quick end. On March 18th, 1998 I was faced with the unexpected. I went to an interview for a job and had a brief syncopal episode, awoke and then went into cardiac arrest. Fortunately for me, the two women who were with me knew CPR and were able to keep oxygen flowing into my body until the ambulance arrived. Twenty-two minutes later the paramedics arrived- I was completely flat-lined.  They used the defibrillator paddles twice, but nothing happened.   Once I arrived at the emergency room and doctors read my vitals, they said I had less than a 1% chance of surviving the night.  If I did survive by some miracle I would be completely brain dead.  My entire family and friends who had driven and flown from all areas of the world were told to “say their good-byes”.  They new it was bad, but never in a million years did they think I would die.  After all, I had just been in Austin celebrating St. Patrick’s Day the night before this tragedy occurred.  How could this be happening?

After 4 long days in a coma and to everyone’s surprise, I slowly began to regain consciousness.   My memory of everything was a complete blur when I slowly awoke.  I was scared, tired, weak and very confused.  I had never broken a bone in my body before and now I am lying in a hospital bed fighting for my life? I didn’t understand.  I am only 25 years old.  Why me?

 Doctors began running a wide variety of test to figure out why this happened to such a young athletic girl.  As it turned out I had been diagnosed with a rare disease now known as Long QT Syndrome.  This syndrome is known to cause syncope (fainting spells) and in my case, sudden cardiac arrest.  After my body regained some strength, doctors told me about the disease and that they wanted to implant a device in my chest that would help monitor my heart rhythms and keep them stable.  All I could do was cry.  I was still heavily medicated and very confused. Once I understood what was happening, I knew it was in my best interest to have the surgery.  Friends and family all agreed.  So off I went.

 The surgery was a success, but the recovery was painful.  I was still very confused and my memory had for the most part been destroyed.  Doctors were sure I would not regain my memory.  Again to their surprise, it came back gradually.  Of course I do not remember the four days I was in a coma, but for the most part it has been restored completely.

 After a few months of painful recovery, I began trying to get my life “normal again”.  I also began to understand the disease more and accept my condition as “ok”.  It was very hard and scary in the beginning to have such a large devise in my chest, but I soon realized how lucky I was to be alive and have the device. From that moment on I have called my device “my trophy”. 

 I am now 30 years old and more alive than ever!  Thanks to my wonderful doctors and excellent technology, I am living a perfectly normal life doing all the things I love.  Since my first implant I have had no complications.  I had my device changed this past December and everything is still perfect! I realized early on after the surgery that you have to live your life to the fullest each and every day.  There is no time to feel sorry for your self, only time to make each second count.

 Miracles do happen…always remember that!

Donna A.Giles

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Kaitlin 

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.

Chicken soup and chocolate chip cookies just wasn't going to make this "all better". How could I help in a meaningful way? And then it came to me; I wanted to hold a benefit that would raise money for research and promote awareness of this disorder. After all, having enough money to fund research is the only way to cure or find treatments for LQTS.

Ryan and Kaitlin (and the rest of their family) are very involved in and loved by the competitive swimming community in our area. So, a lot of their friends were devastated by the news that Ryan and Kaitlin would no longer be allowed to compete. They, too, wanted to do something! At first, Ann was nervous about my plan for a walk/run benefit. She did not want her kids to be earmarked as "different". So, I organized the benefit in the name of LQTS—not specifically for Ryan and Kaitlin. Admittedly, I was nervous too—I never do things like this! I am not usually "the person in charge." But I must tell you, once I got started, all of my plans just fell into place. A park in our area graciously allowed me to use their facility, my husband and son designed a t-shirt, and my daughters donated their time to working the morning of the benefit. A fruit and vegetable market in our area donated bananas, a dear friend donated chair massages and bottled water, and the t-shirt company I contacted gave us a deal on our shirts. I sent registration forms to everyone I could think of within the swimming community. (I decided to start small this year and will hopefully expand next year!) And then something very exciting happened.

The registration forms started coming in!

When April 13 finally arrived it was raining and very gloomy. But my husband and I, along with our three children, headed off to the park any way. As we began to set up, the rain stopped. Although the day never turned sunny and beautiful we had a wonderful turnout. Not only were we able to send money to the SADS foundation but to the Mayo Foundation as well! All of my fears and worries were put to rest, and I saw that all of our hard work had paid off! Afterwards, a friend of mine described this experience as God putting me on a boat in the middle of a body of water (He gave me this idea) and not giving me directions (I had no idea how to do this) but, nonetheless, steering me in the right direction. My hope, and challenge, is for those of us who have not been personally affected by this disorder to step out and help. Those who have been personally affected may find it too difficult to do for themselves. They are busy just trying to deal with this health issue every single day—my prayer is that we will see better and better treatments and hopefully a cure. Until then, my prayers are with all of you, that you will not be afraid to step out and help those you love in a meaningful way.

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Jo's Story

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.

On September the 18^th he had a game in Elton. I followed the bus to Elton. After they warmed up, the game started. On the first play in action, Jo hit the ground like a ton of bricks. I thought he just got the breath knocked out of him. It took a few minutes and he got up. He never complained or anything. During that next week, he went to every practice and the next game was coming up.

It was September 25, an ordinary day. His grandparents were coming in from Texas to see his first home game. I had cooked as usual, waiting for my parents. They arrived in time to go to the game. There we saw Jo exercising and all. They ran through the banner, full of energy to the sideline. The ball was snapped, the tackle was made, and a few seconds later, it seemed like an instant replay. Jo made a few steps, turned, and hit the ground. I waited for him to get up. By the time I got to him, his dad was assisting him. He was vomiting, blue in the face, no response. I was hollering for him to answer me. He was in cardiac arrest. When I looked back, his dad, uncle, and various EMT's were doing CPR. I just lost it. It seemed like forever for help to get there. The ambulance arrived and shocked him 4 times. He was in arrest for 8 minutes. I knew that he was going to the hospital, so I left, and was later called to see where I wanted him Life-flighted. I told them Lake Charles. When I arrived, so did the helicopter that he was in. He was intubated for 24 hours. He stayed in ICU for 7 days. The doctor still had no reason for this. His heart was perfect. After his release we made many trips back and forth to the doctor. The cardiologist diagnosed him with Prolonged QT Syndrome. He had been consulting with Texas Childrens Hospital, in Houston, Texas. We left for there in ambulance. They had come up with the diagnosis of Prolonged QT Syndrome. We were there for 10 days. An ICD was implanted in him on October 19.

We have had to make a few changes in our life for this. It is very hard for Jo to accept, because he still wants to do everything like sports and all. I tell him that his life is more important. That maybe one day he can be that coach, instead of that player on that field.

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Samuel Robert Mitchell

Sept 23,1996-Jan 5, 2000

Sammy was a late-life fulfillment of my dream of having three wonderful children. We were thrilled to find out I was pregnant. The age range was perfect for the older kids to enjoy their little brother and they took an active role in his care. They absolutely delighted in each other.

On Sammy’s 3^rd birthday he lost consciousness while swimming. We couldn’t find a pulse and performed CPR. He spontaneously recovered before the ambulance arrived. The doctors at the ER were baffled and sent him to a children’s hospital for evaluation. We had many other tests and specialist consultations, but nothing was found. No one suggested a cardiac work-up. I was uneasy without a medical explanation but found an outlet for my fear by trusting in God. 

Three months later Sammy went into a quick convulsion and lost consciousness. We called 911 and did CPR until they arrived, but little Sammy’s heart never started again. Our precious son was dead. Anguished, we waited for the autopsy results to find out why. The phone call came; they found nothing wrong with him.

Our other children were tested with a resting EKG and sonogram, which also showed nothing. Months later our doctor insisted that we all have stress tests. These showed possible LQTS for both children. The kids were put on beta-blockers and removed from their competitive sports activities with regret and uncertainty. Just last month, my mother had a stress EKG for an unrelated reason and it showed LQTS. This result identified the genetic carrier for Long QT Syndrome.

We know that Sammy’s legacy is twofold. Other lives will be saved through his story, including possibly his own brother and sister. Two TV stations have spread his story to promote awareness and my cardiologist has lectured local physicians. Secondly, my walk with my Comforter and Lord has survived and been strengthened.

Submitted by Wendy Mitchell,

Sammy’s mother

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Tom's Story

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.

Tom made a full recovery and is still celebrating his life. A gifted athlete, it was very difficult for Tom to give up sports. At age 9, when the doctors suggested golf, he reluctantly agreed. Through the years his enthusiasm has increased. Of course there will always be a longing in his heart for the team sports he wasn’t able to participate in. But now at twenty-one, he’s a great golfer and loves the game.

One of Tom’s greatest strengths is his positive effect on people. His sense of humor and lightheartedness put people at ease. He’s great with kids. His balance of encouragement and teasing spurs them on to try their hardest. Of course some of his gifts are innate, but we know his compassion and warmth are also the result of overcoming and living with the challenges of Long QT syndrome.

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Toni's Story

 

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.

The fire station was just a few minutes away and Malcom Cameron, a Peachtree City EMT, was in the shower. As he reached out of the shower for a bar of soap, his pager went off. He put on his clothes and headed to our house. When he arrived he began CPR. He continued CPR and a few minutes later the ambulance and police arrived. They used the defibrillator on her, and her heart began to beat. As they began to put her on the stretcher, her heart stopped. Once again they used the defibrillator. Her heart started once more as they put her in the ambulance.

It was a 20 minute ride to the hospital in Newnan. Just as they entered the driveway to the hospital, Toni's heart stopped once more. They wheeled her in and put her on life support. She was unconscious for the next 17 hours. We did not know what had happened to her, did not know if she would recover, and if she did, did not know how long she had been without oxygen.

There is a little chapel at the hospital that I believe has a direct line to heaven. That is where we prayed and that was where we were when they came to get us to say that she was awake. We ran to see her. The hospital had checked for aneurysm, stroke and everything they could possibly think of. Someone mentioned that her father had died of a heart attack and the cardiologist called several Atlanta hospitals to see if they could have an echocardiogram done. The cardiologist said he was able to get Toni in to Piedmont Hospital to have the test done and they arranged to transport her by ambulance. When we arrived at Piedmont, they were waiting and took her right in. When the test was complete, Dr. Blincoe of the Northwest Cardiology Clinic met with us to tell us that the echocardiogram showed no problems.

I met my husband in 1962 and we married the following year. As I got to know his family, I learned that his mother had died suddenly in her sleep in 1937 when he was only 3 months old. She had not complained of any illness and the death certificate said the cause of death was acute indigestion. She was in her twenties when it happened.

During my husband's childhood, he had suffered many fainting spells. He said that most of the time he did not tell anyone what had happened. My brother-in-law recalls once that he had to be rescued while swimming, but that was really the only time he was aware that it happened. For several years after we were married, my husband did not have any of the fainting episodes. Then, around 1970 he fainted at home and I had to call the EMT. He had these spells three or four other times over the next few years, but I only recall having to call the EMT twice. After each time, he would see a doctor to have a series of tests done, but find nothing wrong. For a while things would return to normal. In early 1980, he was diagnosed with high blood pressure and was prescribed Corguard®. For a few years after that everything seemed to be okay.

Around 1984, he began having many more of the near-fainting spells. He went to numerous doctors but other than a "nervous stomach" and high blood pressure, nothing was found. He remained on Corguard® for high blood pressure and was careful of his diet. In September of 1986, he had a spell at the airport but did not lose consciousness and refused to let me call an ambulance. When we arrived home, he was unable to leave the house for several days but seemed to get back to normal after resting. He finally agreed to see a doctor about a week later and after extensive testing he checked out okay. Then on an afternoon in November of 1986, he died of an apparent heart attack.

Doctors were running similar tests on Toni, and similar negative results were occurring. There were so many unanswered questions over the years. However, this time there was finally an answer: Elongated Q-T Syndrome, or Long QT. It could be treated. Toni would most likely live a healthy life. As we learned more about this strange disease, all the pieces began to fit. On that Sunday morning in May 1988, by the grace of God, my daughter recovered completely. The Lord was surely with all of us through each and every episode that my husband had had over the years and He blessed us with the greatest miracle of all - with my daughter's life. It was the Lord's timing that caused us to have moved so close to the fire house. It was His timing that caused Malcom to reach out of the shower at the precise moment the call came in (I wondered why Malcom's clothes were wet and what was in his hair ((it was still the shampoo.)) It was His timing that prompted the doctors at Newnan Hospital to investigate the suggestion that her heart could be to blame. It was His timing that allowed the opening at Piedmont Hospital for Toni to have tests done. It was His timing that put Dr. Blincoe and his colleagues on staff that day. It was His timing to allow a young resident doctor with the team of doctors tell me that he had just finished writing a paper on the disease. It has been a "life-chain" of miracles.

Toni's brothers, Jimmy and Albert, were tested immediately. While one showed some indication of the Long QT, the other apparently did not. It was recommended that both should take the beta blocker, as a precaution. I spent many hours trying to recall any unexplained incidents that may have occurred during their childhoods that could be linked to Long QT. I could recall none. All three children had always been extremely active. Their father was an avid Steelers fan and loved the game. Consequently, the boys played little league football from a very early age. All three children loved to swim. They all had had many of the normal childhood illnesses with the general medications prescribed. Even with all of the bumps and bruises, several surgeries, and a few hairy accidents, all three grew to be healthy, happy adults. We were truly blessed.

Each of my children are now married to wonderful people. Since all were keenly aware of the family history, as the babies began to come along, each was tested. Toni had two pregnancies, and two beautiful little girls. Both of her girls, Amy and Abby, have been checked repeatedly and neither shows signs of Long QT. Albert, the oldest, was recently checked again. He, too, shows no sign. However, his two sons, Roman and Reed, who were tested as babies and did not show any signs, were recently tested and both boys do have the disease. Toni's brother, Jimmy, tested positive earlier and takes the beta blocker. When his daughters, Isabelle and Gabbie, were born they were also tested. Recently, both girls were diagnosed with Long QT. Over a month's time, Robert Campbell, M.D., Chief Medical Officer at Sibley Heart Center of Children's Healthcare of Atlanta, tested all six of my grandchildren and found that four of them have Long QT. To know that it is there and can be treated gives them a better chance to live long and healthy lives. While being aware gives an edge, it is still a mystery that the sons of the son who does not show any symptoms of Long QT have the disease, while the daughters of the daughter who does have Long QT do not. I hope the events since my husband's death in 1986, that day in May 1988, when Toni almost lost her life, and all of the events since, have played some small part in the great strides made in diagnosing and treating this mysterious disease. I will be forever grateful for the past and present care and attention that Dr. Blincoe and Dr. Campbell have given my children and grandchildren. Both doctors even recommended genetic testing to see if medical science can gain more knowledge on Long QT. Dr. Blincoe and Dr. Campbell have made themselves available both day and night to answer our questions, calm our fears, and give us all a brighter hope for the future. I am forever grateful for the Lord's blessings in our lives.

 

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Kellie's Story

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. As a teen with Long QT Syndrome, this was a problem. I met with my teacher to discuss my grading and to ask if adjustments could be made. The school was aware of my having Long QT Syndrome, and my teacher assured me that my grade would be fine. I had been so disappointed by the lower grade on my report card because I strive to keep my grades high, and I finally knew what had caused it. We asked my counselor to talk to my teacher about the grade and decided that I should talk to this year's teacher to be sure that the fitness test, which was also part of this year's final exam, would not lower my current grade.

I asked my current teacher many times what to expect for grading my fitness exam, but I never got a clear answer. She said I could just decide how I felt with each activity, but I wanted to know exactly how I would be graded. The last thing I wanted was another surprise "D." Concerned, I visited my counselor again. He then spoke to my teacher. Although the school had the Long QT Syndrome athletic guidelines from the SADS Foundation, we also asked Dr. Vincent's office to send a letter regarding my participation in timed p.e. activities.

The situation grew more serious when my teacher punished the class because of a few students' misbehavior. She had us run a long distance when there were only a few minutes of class left. My safety was at stake, and I was upset that she had not taken that into consideration. My parents were infuriated when I told them about the incident, and we made another stressful trip to the counseling office. After this meeting, we had a few more unsuccessful meetings because my teacher acted like using the doctor's orders and making adjustments for my safety was a chore. Finally, my parents and I found ourselves calling the school for yet another meeting with my counselor. The athletic director was invited to this one, and I would let her and my parents handle it. After what seemed like a long time, my parents came out of the office and I felt relief as I heard the words, "Change has occurred."

Because of my perseverance and the work of my parents, counselor, and the athletic director, the policy for students with health conditions has been changed at my school. Beginning with the 2004-2005 school year, these students will have two options. The first is to take Adaptive P.E.; in this class each student will have an individual plan for his or her specific condition. As part of this class, each student will research beneficial activities for his or her personal circumstance. If students do not want to take the adaptive class, they can choose to take the standard p.e. class. Both options will allow students to be graded with a Pass/Fail, which will have no effect, positive or negative, on their grade point averages. My grades in physical education have each been changed to a Pass, much to my satisfaction.

Although making a difference in my school required a lot of work and was frustrating at times, it was worth it. I learned that, through being assertive and perseverant, change can be made for the better. Students of the future will be able to participate in p.e. classes without the challenge of balancing safety and grades. My hope is that what has occurred in my school will spread to other schools. I believe this can happen.

 

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Rachel's Story

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.

After months of anticipation, the day of my baptism had finally arrived. The day dawned sunny and beautiful, family and friends gathered along the family creek where my sisters and I had played. The water felt wonderful as I stepped into the creek. That's the last thing I remember. As I stepped out of the water, I passed out and fell face first to the ground. When my mother got to my side, they turned me over a checked for breathing and a pulse. Finding neither, CPR was started and someone called 911. After approximately five minutes of CPR I regained consciousness, and was transported by ambulance to one of the local hospitals. My parents were told that I had possibly experienced a seizure and was seeking to gain attention. My parents did not know what to think, but took me home hoping that it was just something that happened due to the frigid water and heat of the outdoors. An appointment was made for me to see the family pediatrician who felt the possibility of epilepsy was probable and recommended an EEG. My parents also chose to have a cardiac workup done to rule out the possibility of cardiac issues. So I had an echocardiogram, a treadmill test, and a holter monitor. Looking back to the day of my baptism, we believed it was a miracle how God had intervened and saved my life. However, over the next two years I experienced three more "fainting spells" that lacked explanation or diagnosis, even with all of the cardiac tests or visits to the emergency room.

My third fainting spell occurred on March 18, 1991, while playing on a merry-go-round. The next day I experienced my fourth arrest. After this I was taken to the emergency room where my parents demanded to have another EEG done. When the physician came to examine me he made the comment, "OH this is the girl that faints," and turned and left the room. Later that day my parents decided that if I were to have another loss of consciousness they would take me to Children's Hospital and Regional Medical Center in Seattle to receive the help they needed. They felt that if I were to have another "fainting episode" in Walla Walla that I would die.

The next day, March 19, while playing my piano solo for a recital, I had a cardiac arrest. A call to 911 was made; CPR was started and continued for the next fifteen minutes before an ambulance arrived with a defibrillator. I was defibrillated once; an irregular heart rhythm was established and I was transported to Walla Walla General Hospital. I remained unconscious and in cardiac distress. The decision was made to airlift me to Children's Hospital in Seattle, Washington. For four days I remained in a coma-like state. Unable to respond coherently or remember anything, my parents were told that most likely I would suffer severe brain damage from the length of time my heart had stopped until I was revived. My family was told that the current state I was in was what they should expect for my future. After four days, I "awakened" with no memory of the previous events, but with all my functions intact. Later, doctors would say it was a miracle I was still alive and with no residual effects.

The cardiac team at Children's evaluated me and recommended that I be seen by a pediatric electro physiology EP cardiologist. As they were unable to completely diagnose my condition. Oregon Health & Science University (OHSU) in Portland, Oregon, was the nearest facility that would possibly have a pediatric EP cardiologist; otherwise I would need to travel back east. My parents were told that I would not be able to leave the hospital until a diagnosis was made or a treatment could be found. The fear was that I would not survive the next cardiac arrest. Children's Hospital contacted an EP cardiologist at the University of Washington who was willing to evaluate me. He did not work with pediatrics, but wanted to take a look and see what he might be dealing with. Thus Dr. Gust Bardy was introduced to my family. Dr. Bardy agreed to take me on as one of his patients.

After meeting with Dr. Bardy he suggested that an implanted cardiac defibrillator (ICD) would be the best form of treatment. I was transferred to the University of Washington after a week at Children's, where I would remain for the next three weeks. During those three weeks numerous electro physiology (EP) studies, echocardiograms, and cardiac angiographies were completed to see if any arrhythmia or structural heart defect could be found. It was during this time that I was diagnosed with possible Long QT syndrome or sudden cardiac death syndrome and bradycardia, and the need for an ICD became evident.

All of the electro physiology tests that were performed on my heart concluded that I would be able to receive the new smaller ICD model. This eliminated the possibility of open-heart surgery, which would have been necessary if I had needed the older ICD model. The new ICD consisted of the "can", or physical device, and three leads. One lead was used as a grounding patch and two leads were placed inside the heart. One lead was implanted in the base of the right ventricle and the other was positioned in the right atrium.

In April of 1991 my first ICD was implanted. The surgery took approximately four hours due to my size, the size of the device and the intensiveness of the procedure. The device was so large that it had to be implanted in my abdominal muscle. I was also started on Inderal, a prescription to help reduce my heart rate and hopefully prevent further episodes of ventricular fibrillation.

After a week of recovery I was finally allowed to return home to Walla Walla, where my life would never be the same. We all began adjusting to the physical restrictions in my activities; no swimming, horseback riding, bicycling or running. My medication left me groggy and lethargic. This was a routine that, after time, eventually became normal. Along with these changes, frequent trips to Seattle were made to see Dr. Bardy and monitor the ICD. Over the next few months I experienced numerous cardiac arrests, and was defibrillated by my ICD. After each cardiac arrest we would travel to Seattle so my device could be interrogated, reset and medication adjusted.

Within the first year after surgery I had to return to Seattle, for surgery, to re-attach the lead to the base of my heart because it was dislodged while I was playing around on a rowing machine.

I experienced so many cardiac arrests during the next two and a half years that my first ICD needed to be replaced sooner was expected. It had been the hope that the battery life would last for four to six years. The fortunate thing was that a new device had been developed that used a simpler two lead system and was much smaller. So my first device and leads were removed and the new device was implanted under my left breast.

In June of 1996, while carpooling to school with a friend my device suddenly shocked with no warning. It was found that I had a fracture in my lead and would need to have surgery immediately. So, on June 10, 1996, I received my third device. At this time Dr. Bardy again approached my parents with the idea of purchasing a portable Automatic External Defibrillator (AED) for our family, because of the possibility that my sisters could have the same fatal heart arrhythmia. Due to the cost of the AED, my parents decided to wait.

In August of 1996 I started my senior year of high school, while Talitha began as a new freshman. We had a wonderful time attending high school together and loved playing practical jokes on each other. I graduated in spring of 1997 and was preparing to go to college that fall.

On August 1, 1997, while vacationing in St. Maries, Idaho, on the St. Joe River with longtime family friends, my family suffered its greatest loss to Sudden Cardiac Death Syndrome. It was a beautiful summer day and we had all jumped in to "ride" the waves of a passing boat. As we finished riding the wake, we swam back to the dock to get out. I climbed out of the water and as Sarah started to follow me, Talitha said, "Get out of the way." Sarah turned around to see Talitha floating face down in the water. Sarah pulled Talitha's head up out of the water and my mom and I tried to pull her onto the dock. Talitha's body weight was too much for us and we yelled for help from friends nearby. CPR was started as soon as Talitha was on the dock. An ambulance arrived and Talitha was defibrillated three times with no success in obtaining a heart rate. It was decided that it would be best to transport her to the local hospital, so she was intubated and loaded into the ambulance. CPR was performed during the entire transport to the hospital. Upon arriving at the hospital in St. Maries Talitha was defibrillated two more times with no normal heart rhythm that was sustainable. At that point the doctor shook his head at the nurse standing by. As he turned his head, he saw my mother standing in the room and upon making eye contact with her, decided to try one more time. Upon the third shock an irregular heart rhythm was established that was sustainable. However, she was unable to breathe on her own. Talitha was airlifted to Sacred Heart in Spokane, Washington as soon as possible. During the next three days our family and close friends waited to see if another miracle would happen. On August 3, 1997, my beautiful little sister was pronounced brain dead. She was sixteen years old.

In the past Talitha had expressed a desire to be an organ donor. As our family struggled over the decision of organ donation we finally realized the importance of fulfilling Talitha's desire for the gift of life to be passed on.

Due to the genetic propensity for this fatal arrhythmia to affect my youngest sister, Sarah, my parents were strongly encouraged to have a defibrillator implanted as a precautionary measure. It was a difficult decision due to the impact it would have on her for the rest of her life. The ultimate decision of whether or not she would receive a defibrillator was left up to Sarah. She did decide to undergo the implantation, despite the fact that she had never exhibited symptoms of any cardiac arrhythmias.

Friends and family have ever been supportive of us through everything. They have provided support, meals, a shoulder to lean on and just plain friendship. Several friends did pull away due to the stressfulness of the illness and how much it became a part of our lives.

Dr. Gust Bardy has also become an integral part of our lives. He has always been an amazing support for my family and myself with his honest and open manner. Without this amazing physician, God only knows where we would be today.

My parents, Richard and Mary Lynn, are two amazing people who have fought for the lives of their daughters, survived the death of a child and been through more than anyone else I know. When I was first diagnosed with sudden cardiac death syndrome my parents asked that ICD's be placed in Talitha and Sarah as well. However, my sisters did not meet the criteria at the time and so ICD's could not be implanted. It was not until Thlitha's death, that Sarah finally met the criteria.

My little sister, Sarah, is truly an inspirational young lady. She has dealt with the frightening events of my diagnosis, survived the death of a sibling, and adjusted to life with an ICD of her own. She has gone through a remarkable transformation as she has grown into a beautiful young woman. Sarah is 18 years old and will be graduating from high school this year.

My mother, Mary Lynn, has had the amazing opportunity to speak for Agilent Technologies and share our story, to help promote the availability of portable defibrillators to the public.

Long QT has impacted my life in a profound way. Several of my close friends found my diagnosis too frightening to deal with and distanced themselves from me. Despite restrictions on my activities I remained involved in 4-H, rode horses, became a junior volunteer at Walla Walla General Hospital and earned my Certified Nursing Assistant (CNA) license my senior year of high school. I decided to attend nursing school and graduated with my nursing degree in May of 2001. On August 13, 2000, I married my high school sweetheart, Nicholas. Currently, I work as a registered nurse at Children's Hospital and Regional Medical Center of Seattle.

Long QT impacted the way I look at life and death today. I feel that I can be a support to families I work with as a nurse because of what I have been through. I have also had the wonderful opportunity to speak for several support groups of people who have implanted ICD's.

To this day people are amazed that I am alive and at what I, and my family, have been through. To look at me, you would never know that I have an ICD or that I even have heart arrhythmia. Because of my beliefs I do not believe luck kept me alive. I believe that the only reason I am alive today is because of God's intervention.

 

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Mary K Elizabeth Butt

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.

Mary was my oldest child and only daughter. She loved being the oldest and was great at helping her two younger brothers in a variety of ways. She also loved to tease them at times. Mary loved to help me clean the house and do the laundry. Mary was a huge animal lover and adored her cat Tigger, and our family dog Daisy.

On Saturday, May 3rd, 2003 the life of our family changed forever. Mary was playing in the front yard with her brothers and cousins, when she suddenly collapsed for no reason. A heroic attempt was made to try and resuscitate her and she was life-flighted to Children's Hospital in Columbus, Ohio. The efforts to save her were not successful. Mary died that day, and we had no idea why.

Up to this point Mary was perfectly healthy and had never had any warning signs that anything was wrong. The doctors ruled her cause of death as a cyst on her pineal gland the size of a pea. There were other doctors who did not buy into this cause of death. After six months of meeting with doctors and talking to many friends in the health profession, I was directed that her cause of death could have been heart related. The SADS web site put the final pieces of the puzzle together.

Since November of 2003 my father, brother, niece, nephew, and myself have been diagnosed with LQTS. My father, brother and myself all had ICD's implanted and my niece and nephew are currently on beta-blockers. We also discovered during this process that my sister, also named Mary K, died because of LQTS seventeen years earlier.

On the one-year anniversary of my daughter's death we held a walk in her memory. We raised over $12,000 and used the money to purchase five AED's for the local schools and also donated a portion of it to the SADS Foundation to help raise awareness. Although my family has gained life-saving information because of my daughter's death, there isn't a day that goes by that we don't wish that she were still with us. Her winning smile and big brown eyes will forever be etched in our memory. She will live on forever in the hearts of everyone she knew.

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Chrissy & Jimmy Brackett

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.

My son, Jimmy, died in his sleep April 15,2000 leaving behind a wife and a baby, Alexis, who will never know her Daddy. My daughter, Chrissy, died on July 25, 2002 in her sleep also suffering from a seizure and left behind a eight month old baby, Jessica, who will never know her Mommy. Now that we are aware of Long QT, my grandchildren can be treated for it as well as other family members and myself. A simple EKG could help save someone's life. For more information on Long QT Syndrome, click on to the web sites below. I know my children would want to help save others.

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I spend my day as a middle school principal, guiding the physical, emotional and intellectual development of children between the ages of 10 and 15. Statistics continually show that schools are the safest place a child can be in our nation Safer than the mall, at home, even asleep.

An average middle school has 900+ students and over 100 adults, all sharing the same roof, oxygen, unique culture. We tend to know the medical issues of our kids and staff well-although always the undiagnosed heart problem. We also have 50 visitors a day-deliveries, parents and grandparents picking up children for dentist, families attending a band concert A secret: of all the things that make school principals lie awake at night-never violate the trust a parent has placed in you to keep their child safe. Far outweighs quality of teaching and learning, class size. Lose a child, there is nothing you can ever do to bring the child back.

For 37 years, Gallop Poll has tracked parents attitudes and opinions of our public schools Number one ranked goal-not prepare my child for Harvard, a successful, productive adulthood. Keep my child safe. Children in our 8th and 10th grade in Everett are trained in CPR and the use of AEDs, in partnership with Medic One. For free

Learning CPR and how to use an AED at school increases the likelihood that someone who experiences Sudden Cardiac Arrest will be provided with oxygen to the brain during the critical first few minutes, and will stop the fibrillation of the heart muscle, through the use of an AED. See, when a muscle goes begins to fibrillate, no longer controlled by the involuntary or voluntary signals from the brain All of the separate muscles making up the heart begin to twitch and contract on their own rhythm-no longer coordinated.

Those of you who mess around with car engines, it is like switching the order of the spark plug wires on a 8 cylinder motor Or, if ever enjoyed the great music performed by the Everett Symphony, it is like those 5 minutes before the concert begins, when each musician is practicing a different section of music, played at a different pace. Like a mis-wired V8 motor, heart muscles can not idle or race in a coordinated fashion. Like a symphonic orchestra, heart muscles can not play at their own beat, they must all work together to sound out those rich, deep notes of Da Boom, Da Boom. Learning CPR and the correct use of an AED does something else for secondary students, harder to measure. In a world where decisions are mostly made for them, where it is frequently impossible to feel much power to effect positive change in a big way, gives each student the skills to save a life. What a gift. The ultimate gift-one which is the theme of so many of our children's stories. Think of Peter Pan, Sleeping Beauty, We empower and enrich each child-we tell them: you are trained and trusted. You have value. You can be somebody.

Last summer Tanner, Scott and Taylor were playing on a rope swing just east of my school. Taylor lost his grip and fell 40 feet-fell on his back, went unconscious. He stopped breathing. Scott called 911 on his cell phone and ran to direct the EMTs to the spot in the forest where Taylor lay, while Tanner bent over his friend and began CPR. Terrified? You bet. Too fast or two slow? Probably. But, faced with the unconscious, still body of his friend, Tanner went lip to lip for over 15 minutes. Counting out his chest compressions and keeping oxygen flowing to Taylor's brain. Did he think twice about starting CPR, when everything in our society has taught him that putting his mouth to another boy's mouth is just wrong? No. When faced with the image of his friend dying, Tanner didn't hesitate.

I spoke with Taylor on Tuesday of this week. Making his way through 8th grade. Alive. Tanner says that kids don't say much to him anymore about what he did-at first they asked him whether he actually did mouth to mouth. But, when he told them without missing a beat, yep, I did, he took on the image of a folk hero of sorts. Tanner made it real-he used his training to save his friend's life.

A few years ago a pitcher on one of our school baseball teams was pitching at batting practice. Those of you who know about baseball know that coaches train pitchers to step behind a L-shaped shield after each pitch, to get out of the way of any balls hit directly back at them. At practice this day the pitcher didn't duck behind the L-screen in time, and the line drive ball struck him directly in the sternum. Knocked him to the ground, and his heart went into Sudden Cardiac Arrest. Two boys sitting in the bleachers saw what happened, ran past the frozen coach, and immediately started CPR. Where did they learn the skills of CPR? In their 8th grade class, along with every other 8th grader in their class. Kept oxygen flowing to the pitcher's brain until the aid car arrived, transported to the hospital, AED restarted his heart at the correct rhythm, recovered completely.

Everett Public Schools works every day to earn the trust of the parents who send their children to our campuses, and to always be worthy of the respect with which our community has so steadily demonstrated through its support for so many years. Never forgotten that our first responsibility is to keep a child safe A team of district leaders and Medic One volunteers reviewed recommendations for AEDs in schools Invited AED manufacturers to submit qualities of their units. Created a standard for AED numbers and placement for each of our school district sites. Selected one model of AED for our district-arranged for the new vendor to buy back other models obtained earlier. In partnership with Medic One, no child, no staff member, no grandfather attending a school play or hyped up fan of a team from another district will ever be out of reach of an AED when needed. The volunteers at Medic One will continue to train our secondary students in CPR and the use of an AED. This morning each of us has the opportunity to be part of something unique, and to recognize the amazing relationship between Medic One and the greater community in which it operates. Just as my friend David's dad made sure he had his dog biscuits in case of emergency, you can help our schools be prepared for emergencies with AEDs. Just as Tanner made a life-saving gift when the time came, so can each of us this morning. We can continue to make it possible for children who walk through our malls, who sit in the seat next to us at a movie and who are on their way to joining the workplaces in our community are trained in CPR and the use of an AED. You contribution this morning helps raise the odds that the next time a pitcher goes down, or your minister in the middle of a church service, that a youth who is present will be trained and confident that he too has the skills and the power to save a life. This morning is when you can be part of that life-saving act.