The SADS Foundation has been an integral part of my healing from the unexpected loss of my husband and the care of my daughter. They are extremely dedicated to the individuals and families they support, and their passion for their cause, saving lives and supporting survivors is boundless. We appreciate everything they have done for our family, and they have inspired us to work hard for the cause & community as well.
On September 29, 2009 I unexpectedly lost my husband and my daughter lost her father exactly 1 month after her 3rd birthday. We soon learned that Wayne had an undiagnosed genetic heart condition called Long QT Syndrome. Since losing him, our family has learned that other family members have Long QT as well, including our daughter, Lily. And, sadly, we learned that Wayne's death was preventable.
We are so fortunate to be connected with the SADS Foundation, as they have been a compassionate source of support and expertise in the field of genetic heart arrhythmia syndromes. Not only do I feel comfortable with the information they give us, but I feel like I have understanding friends to whom I can simply talk to when in sorrow or fear. As a way to give back and further advance their efforts, I've chosen to volunteer on behalf of the Foundation. Each year we host a celebration of life in Wayne's memory in an effort to raise critical funding and awareness for Long QT Syndrome and other SADS conditions. These events have been a tremendous source of personal healing, as well as raising significant funding & awareness. My life & the way I've dealt with the loss of my husband is dramatically different in a positive way as a result of the SADS Foundation and their incredible staff.
I cannot say enough about the dedicated people and the hard work that the SADS organization provides to the general public. They are dedicated to educating people about the dangers of SADS related conditions. More importantly, they provide encouragement and comfort to parents that have had to endure the loss of a child due to a SADS related syndrome. My father passed away at age 33 from a SADS related problem and I lost a sister in 1897 to the same malady. Nothing is worse than a premature death and a life cut short, especially when it may have been detected and potentially prevented.
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.
I became involved, as a volunteer, with the SADS Foundation in 2005, following my sister's death. I know first-hand how devastating sudden cardiac death is for a family, and the frustrations of being unaware of warning signs. SADS goal to spread awareness for diseases like Long QT, that killed my sister and with which several members of my family and myself are affected, is also a lifelong mission of mine. Alice, Laura, and the whole team at SADS have made volunteers feel like part of the family, and given us a chance to help make a difference in a fight that is so close to our hearts.
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.
For years my husband had no idea what was wrong with him. It wasn't until he was about 24 he was finally diagnosed. Then we found out about the SADS foundation and was overwhelmed with a wealth of information. Since that time, I have done all I can as a volunteer to help and get information out to as many people as I can.
When my son passed away from fainting spells that went undiagnosed by specialist after specialist, it was only after his death that we learned of www.SADS.org. They were kind enough to respond to our need for answers as to WHY he passed away. They referred us to doctors who reviewed my sons medical records gratis and confirmed that he was afflicted with SADS, and that if he had been diagnosed correctly he would still be alive today. Because their wonderful responsive team was able to help us so much to find closure, our family has joined the cause as volunteers to help spread the word throughout the medical and acedemic community, to educate, inform, and help to save others lives. We take great joy in knowing that we are helping to support them in saving others from this horrible life taking affliction.
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%.