I am writing to you as an advocate for – and perhaps the #1 greatest fan of – the SADS Foundation. This organization has truly impacted my life, and I cannot imagine how I would have coped with the trauma that I have over the last six months without them.
In June 2011, my then 13-month old son, Lee, was diagnosed with Long QT 8 / Timothy Syndrome. This diagnosis is one of the more rare conditions that the SADS Foundation provides support and education for – and was obviously extraordinarily devastating news for us to receive. The prognosis for Lee’s condition is not good, but already with the constant love and support from the SADS Foundation, we are doing everything possible to ensure a happy and healthy life for this amazing little boy.
The day I found out about my son’s diagnosis was a day I will never forget. Feeling as if I just had the air knocked out of me, I knew our lives had just changed in more ways than I could comprehend. I felt incredibly alone, and had no earthly idea how my husband or I would be able to handle this news. It was only after talking to the SADS Foundation that I finally felt like we weren’t alone, and that there really are people out there who understand what we were going through. Alice Lara and Laura Wall were like guiding angels – calming my fears and walking me through what Lee’s diagnosis may likely mean for our family. I could not have imagined going through those first days – and the last many months – without them. They have gone above and beyond to provide me – and Lee – with resources, contacts for some of the world’s most well respected professionals in the field, and networks of other families and parents.
I have volunteered with, and donated to countless non-profit organizations and foundations in my life, and I truly must to say the SADS Foundation is one of the most professional groups I’ve ever come across. Not only are they professional, but they also take the time to get to know each and every family and do their very best to get them the support and attention they need.
In the short time that we’ve been dealing with our son’s diagnosis, my family (including extended family and friends) has helped raise over $5,000 for the SADS Foundation. I feel 100% confident that this money will continue to help the SADS Foundation support other families like mine and also help bring awareness to the frightening Sudden Arrthymia Death Syndrome. I know for certain that I am one of thousands of people who will make the same statements of appreciation for this incredible organization. All the families I know who have been affected by a SADS condition have made a commitment to support the SADS Foundation in any way possible, and I can confidently say that I will be a supporter – and a fan – for life.
When we lost our daughter suddenly to a previously undetected heart arrhythymia on June 20,2005, we had no where to turn. Because long qt is such a rare disorder there was little support for those afflicted. While searching the internet we came across the SADS website. We have found that SADS has a wealth of information and reaches out to those who suffer a loss such as ours. We have also attended some of their conferences and have learned so much from their knowledgeable experts. We feel SADS is such a valuable organization and have held an annual fundraiser with proceeds going to them since 2006 to help raise awareness. Our fundraiser is called Christie's Heartoberfest. We have rasied over $100,000 for SADS and will continue to do so in the future.
When my son was diagnosed with a genetic heart problem that we now know affects both my daughter and I, SADS was there. They had been there before we knew it by supporting research into our condition. They had educational resources that let us understand our condition better. They had forms to use for school and other care givers. They helped us work through the insurance issues of genetic testing that our insurer would not agree to fund at first. Later, when my daughter had to have an ICD implanted for this condition, the contacts helped us develop kept us calm and supported us through the surgery. I am very grateful for SADS.
I first became aware of the SADS organization almost 3 years ago now. My daughter, Morgan, then 12 years old, had a syncope episode that landed her a trip to the emergency room where it was discovered she may have Long QT. Thankfully, there was someone that quickly referred me to the SADS organization. To say they changed my life, and that of my daughter, would be an understatement. At a time in my life when I felt so incredibly lost and scared, SADS was right there with me to offer support, a listening ear, a shoulder to cry on, resources, referrals and so much more. SADS has connected us with other families, living with SADS conditions that I've gleaned support and encouragement from. Day or night, the middle of the night, the early morning, it didn't matter. The SADS organization was there for me. They always answered their phones, promptly returned phone calls, answered e-mails and even gave me their own personal cell phone numbers in case I needed anything. I never once felt like I was an inconvenience or wasn't cared for. SADS has stuck by me, daily sometimes, for the last 3 years. As we are still seeking help for Morgan, SADS continues to stand by me. They have been there through my tears, trips to the hospital, and the happy times as well. I've had the pleasure of meeting some of the SADS staff when they took time out to meet with Morgan and I while visiting our area. Just recently, the SADS organization put me in contact with an AED machine company. The church my daughter and I attend wanted to purchase an AED but didn't have the funds to do so. Ms. Laura Wall from SADS connected me with a wonderful company that donated an AED machine to our church. It's comforting to know that we have that resource not only just for Morgan, but others. As we still seek answers to Morgan's condition, I know without a doubt that SADS will be right there with us. My children and I are so passionate about this organization that we spread the word every where we go. We've both done school projects on SADS, made speeches, passed out material and raised awareness to the best of our ability. We are currently working on a fundraising project in our town, with all the donations going to SADS. There are so many wonderful things that I could say about the SADS organization and use every opportunity possible to do so. I will always, with passion, work to spread their cause, raise awareness and do all I can to help them in their endeavor to save lives. I have already had the opportunity to refer others, going through scary situations with themselves for their children, to SADS. This organization, will without a doubt, always have my heart. As they have stood by me, so I too will always stand by them as well as the lives they touch.
I have been diagnosed with a Sudden Arrhythmia Death Syndrome called LQTS. I had to have a defibrillator implanted in January 2010 when I fainted for the third time in 10 years. Twenty-three months later, the defibrillator saved my life when my heart would not beat correctly. I was actually shocked 40 times that night until medicines kicked in and the defibrillator was able to pace my heart. I also had a younger sister who died in her sleep at the age of 18 in January 1990. She apparently had a SADS condition that was undiagnosed since she didn't have any symptoms, such as the fainting I had. The SADS Foundation has been a wonderful source of information. If I have any questions, someone always e-mails me back right away. I know they can put me in contact with people who have stories such as mine. They are trying to get word out about SADS conditions, signs and symptoms of SADS, ways to save children's lives, having AEDs in public places, learning CPR, and finding the causes for SADS conditions and genetic testing. They keep up with the latest news on all of these subjects and keep in touch with the national and international experts in this field. They have also set up an emergency system to use when they are told about a child or young adult who may have died due to a SADS. They try reach the medical examiner involved, offer support and advice to the family, they help the family get genetic testing, get information and support out to the friends and community, also. I keep thinking it may have helped my family back when my sister died if we had those services available to us. This is a absolutely wonderful Child and Family Non-profit that I support 110%.
In 1975 my ten year old brother began to faint at odd times. He would faint while we were all playing monopoly, he would faint when playing with the dog, he would faint when he got excited. In short, he fainted and we knew nothing about why he was doing it. He always woke up.
Then, he started fainting and not waking up. Aid cars were called. We discovered that his heart was going into something valled ventricular fibrillation. He was defibrillated on a trip to Children's Hospital in Seattle.
At the hospital he was fainting when he was in the hospital bed. Wires were hooked up to him and they were checking his hear. They could see that his heart was doing weird stuff -- ventricular fibrillation -- but they could not tell us why.
The cardiologist hooked up an external pacemaker and my brother stabilized. But, the doctors did not know why he was having these problems. Finally, a resident came in with an article describing a newly discovered genetic problem called Romano-Ward syndrome that was associated with Long QT.
The cardiologist measured my brother's QT interval -- he actually used calipers -- and found a long QT.
The doctor inserted a pacemaker -- it went into my brother's abdomen because it was quite large -- and sent us all home.
But, our journey with Long QT was just starting. We were asked to all have ECGs and it was discovered that My dad, my sister and my new little brother -- less than a year old-- and myself all had Long QT.
Not much was know about the disease -- it was 1975 -- and we were told to watch for fainting. None of us had fainted except my brother and my dad had spent 21 years in the navy and served in Vietnam for a few years and even had a Purple Heart!
The doctors and our family reasoned that the rest of us would be OK. We were the first Long QT family the hospital had ever seen.
They were wrong but we would not know this for another 18 years.
In that time frame I climbed Mt Rainier, became a volunteer fire fighter- even taught advanced first aid and CPR -- and even responded to a call for help at Husky Stadium where I did CPR on an elderly man and rode in the aid car doing CPR because the crew was short handed. What an adrenaline rush!
I had lots more adrenaline rushes as I went into burning buildings, responded to aid calls, learned how to autocross -- a form of sanctioned car racing where you go through cones -- and did a lot of great things as a young adult.
In 1979 I went to college. My sister followed about a year later (I had graduated from High School in 1975 and went to college in 1979) and my sister had a great start to her college career until she started fainting.
She ended up getting a defibrillator inserted in 1981 or 1982 and the doctors started to think there was more to this Long QT thing.
We were asked to be part of a genetic study so that researchers could try and locate the gene causing our problem. Other people were being identified at Children's and Long QT was getting some attention. Teenagers had been dying unexpectedly and autopsies were not showing doctors why these otherwise normal children were dying. The common thread was unexpected fainting.
I was married in 1982 and we had a daughter in 1984. Genetic studies were ongoing and researchers had learned about a mutation that resulted in a "potassium ion channel polarization" problem and they labeled us Long QT2. Tests showed my first daughter did not have the defective gene.
We had a second daughter in 1989 and tests showed she had the gene. Research was progressing and more info was being learned about this disease. Let's go back to my brother who started all of this -- he was doing great..... and living life even though he had also developed diabetes. My younger brother, also diabetic was also doing great and was being seen regularly at Children's. Both brothers had been put on a drug for Long QT -- a form of beta blocker.
So, we fast forward to 1993, my brothers, sister, dad, and youngest daughter are doing great. My daughter is five years old and taking nadolol -- a beta blocker -- and she is doing fine. Research showed that Long QT affects young people between the ages of 13 and 20 the most and sudden death occurs unexpectedly.
My youngest brother was 18, getting ready to graduste from High school, driving into a park with his girl friend when he saw a car/motorcycle accident. He started to get out of the car to go help out at the scene and collapsed. He had fainted.
Nobody did CPR, Aid car came and took him to Children's, the aid crew defibrillated him and got him back on the way to the hospital. At the hospital my brother's heart remained stable but he had gone into a coma.
We learned that the lack of CPR and the ventricular fibrillation had caused his brain to go without oxygen for a period of time. He was placed on a ventilator and tests were done. We learned that his brain had died. My little brother was declared dead.
We were all devastated. How could this have happened? Was this Long QT thing this real and this dangerous? The only good thing to happen was that my brother was able to be an organ donor and I believe he helped about a dozen people.
Eighteen months later the Washington State Patrol found my next youngest brother dead in his truck on the side of the road. We believe he felt something starting and was able to pull over. Our family had lost two young people to Long QT. Sudden death by Long QT was real!
My sister -- the only one of us to have a defibrillator -- had several attacks and been automatically defibrillated and continued living.
I did not have a defibrillator, my dad and daughter also were unprotected. My daughter continued to take beta blockers and be checked every six months on a treadmill to see if the beta blocker was working.
in 2001 my dad got a defibrillator. In 2002 my daughter got a defibrillator and I got mine a year later. We have all had them replaced but my daughter has had four surgeries to replace defective leads, a recalled defibrillator and survived long QT with no problems until December of 2010 when she woke from a bad dream and had a cardiac arrest caused by ventricular fibrillation.
Her defibrillator saved her life. At the ER, she had texted me and said she was Ok but in the hospital, my electro physiologist checked her out, got her permission to call me and flatly said "this would be a different story if she did not have a defibrillator."
My daughter came to brunch at my place and has almost recovered from the trauma of her cardiac arrest. She has had some anxiety attacks -- who wouldn't? -- and is doing great.
This is a long story but has a summary. Research into Long QT has saved lives. The SADS organization has learned that proper care with beta blockers, defibrillators and education saves lives. While our family has lost two young people to this disease we were also a family that started a long history of research.
The SADS organization does great work and should be supported.
SADS- terrible name, great cause, wonderful people-- provides information that is life-saving (literally). Hardly anyone knows about arrhythmia conditions, even doctors are astoundingly ignorant. And people with the condition have only piecemeal information. so when someone is struck down, everyone says, oh, if I had only known, why didn't anyone tell us about this? This small grass-roots organization is the only one I know of that is trying to get the word out, to save lives. I attended a workshop after I survived a mild attack of arrhthmia and was diagnosed with one of the rarer forms--most people don't live thru it. I feel like I was spared so I could help my extended family who are now able to take steps to prevent dying from this--but I did not know what to do until SADS laid it all out, how to approach them and what needed to be done. This is such a hidden danger, and SADS is about the only thing exposing it so we can deal with it.
I first learned about the SADS Foundation after my son’s death. Before his unexpected passing last August I had never heard of sudden heart arrhythmia. One day while at work, feeling helpless, sad and angry, I goggled CVPT, one of the affiliated illnesses. Of course, there was a good amount of online information to go through. However, the SADS website was one of the few sites that stayed with me during my many weeks of research. Their site was not only easy to maneuver and had a very professional appearance; it also had a massive amount of great information, including links taking me to other reputable and related sites. I absolutely loved the innovation of their Patience & Family Support page, especially the Healing Wall. It was obvious that everything was very well thought out. The website was just a small reflection of the great services I received from the organization since my first contact. A few months ago I made one phone call and the outreach from this organization has been phenomenal. The encouragement, compassion, and support I’ve received verbally and through the actions of the foundation’s staff has been top notch. I feel as if they truly understand the difficulty me and my family are experiencing and they are there for us. I receive a thinking of you phone call or an email at least once a week. Each contact ends with words of encouragement and inspiration. I’ve also received a call from a member of their board as well as two or three other supportive parents the foundation put in contact with me. In the short period of time since I’ve been in touch with the foundation, they have created a memorial page for my son, send me results of donations directed to his page through weekly reports, and have volunteered to attend a celebration of life event I am having for my son later this summer. As a result of their support, I have also found a new and important mission while refocusing most of my grief: working on a way to honor my son by getting out the word regarding SADS as well as this great organization. I know I would have eventually found a way to work through my grief. However, I could not have re-focused this level of organized and positive energy to such a wonderful cause if it were not for the support of this organization and its staff.
We lost our son (age 15) to Long QT in the summer of 1991, before the SADS Foundation was formally started. Shortly thereafter, our other two children were also diagnosed with Long QT. At that time Dr Vincent, was working tirelessly to make sense of the unexplained deaths that were occurring in young people. Blood samples were sent to Dr Vincent to be added to his research. It was Dr Vincent who talked with us and gave us comfort that we would find the underlying reason for this condition. Here we are 19 years later. Answers and good treatment modalities are here. I have supported the SADS Foundation from the beginning; I have seen it grow from a vision to a reality. SADS works everyday to give support to families and to educate medical providers at all levels. SADS is a presence at most, if not all, major Cardiology meeting. SADS continues to work with other specialties, e.g medical examiners, to get the word out about the possibility of this underlying cardiac condition as the cause of unexplained deaths in children and young people and young adults. The work SADS does has saved the lives of many sibling and other family members.
Three year ago we learned our daughter had a serious heart arrhythmia condition called LQTS1. The SADS Foundation was tremendous and instrumental in providing us with education and knowledge on this condition. We receive their monthly newsletter keeping us up to date on information. They are always available to answer any questions we have with a live voice during business hours. We do not know where we would be without their continuous support and education.