Most people never think about their heart beating. They take for granted that it just does what its supposed to do. When Katelyn ('Katie'), began collapsing at 18months old, no one knew she was living with a medical condition, often referred to as a "time bomb", that could have killed her at any time. It would be years, 13 years, before we would learn that our oldest daughter has Brugada Syndrome, an inherited electrical disorder of the heart that causes rythm disturbances and is often fatal. This genetic disease results in her being at risk for cardiac arrest every second of every day and there is no cure.
Once Katelyn was diagnosed the rest of our family had to be tested. It was quite a blow when we found out our 5 year old son Jake also has this disease, and I do as well. Today, Katelyn, Jake and myself all have ICDs = AICDs (internal cardioversion defibrillators) without being too technical, these devices monitor your heat rate and "shocks" the heart to help restore a normal rhythm if an abnormal rate is detected and they also have pacemakers, which help the heart to beat in a regular pattern.
Each year hundreds of thousands of people, including children, die from cardiac arrest. Hundreds of these are from genetic cardiac sudden death syndromes. Most people have heard of a seemingly healthy young athlete that collapses and dies during a sports game. What you don’t often hear is that their condition may have been diagnosable with a simple screening questionnaire & ekg, may have been treatable and their life could may have been saved if there was an AED close by. These conditions include Brugada, Long QT, HCM, even SIDS and others.
We are organizing public awareness activities and fundraisers to help prevent the early loss of life through education and research. We also hope to get all schools & athletic fields to have AEDs. We are hoping to get school nurses, pediatricians and sports coaches to screen children with a revised questionnaire. Our campaign is called 'Keep it Beating'.
For people with Sudden Cardiac Death Syndromes, competitive sports and swimming are known risk factors that may induce a fatal arrhythmia. In some of these syndromes there is also the risk of not startling them because it can cause a dangerous flow of adrenaline that can trigger cardiac arrest. Imagine being afraid that a ringing phone or even your own alarm clock could have the potential to startle your child into cardiac arrest. Imagine losing your child because a simple game of jumping out and scaring them caused cardiac arrest. In Brugada a raised temp when you’re sick or playing hard can put you at risk and many patients suffer cardiac arrest while they are at rest or sleeping. This is the reality for families living with Sudden Death Syndromes. We consider ourselves lucky, and now have these 'angels on our shoulders' unfortunately, for most families the first symptom is often death.
We invite you to help us by getting involved with our campaign!! There is so much research going on and our hopes are that someday soon we will have more effective treatments and eradicate these electrical diseases.
Our 'Keep it Beating’ campaign will include various events. Proceeds from these events will benefit SADS Foundation and the Masonic Medical Research Laboratory - MMRL.
Thank you for visiting our Personal Fundraising Page. You may choose to get involved with our campaign or you may wish to donate through this site. Donating through this site is simple, fast and totally secure. If you donate through this site 100% of your profits go to the SADS foundation. If you would prefer to donate to MMRL - Masonic Medical Research Labortary, which is an advance research facility that dedicates its research to cardiac arrythmias (you can find out more about them at www.MMRL.edu ) by mailing your check made payble to: 'MMRL', and mail to: Keep it Beating Campaign, c/o Cathy Gallbronner, 50 Peck Hill Road, Woodbridge, CT 06525
We are also looking for event committee members and sponsors. Please let us know if you can help us. You may want to join our efforts and start our campaign in your community.
Many thanks for your support -- and don't forget to forward this to anyone who you think might want to get involved, learn more or donate too!
If you or a member of your family have Brugada or another sudden death syndrome, or suspect you may, please feel free to contact us for more info. We would also like to hold a picnic to join families together who are facing the same challanges.
Cyndie & Todd Baker and Family
Up coming 2007 ‘Keep it Beating' events include: an all day Scrapbooking event on April 22, 2007, a 'Bowling for Brugada' event, and a summer car wash. Please contact us for more information.
Cyndie @ 203-488-2497 email@example.com
Cathy, Co-Chair @ 203-387-8211
Currently we have raised $1700 for the MMRL, $700 for SADS from our combined first two events which is a good start, we hope to be more successful in our fund raising efforts for 2007!
Check out our campaign t-shirts and more at.... cafepress.com/keepitbeating