Hi My name is Rebecca Knowles and I live in Rochester,NY. I am trying to find a support group or other families and possibly a area SADS representative.
MY 7 year old son Cameron 3 months ago had Sudden Cardiac Death and was revived after 12 min. He has been diagnosed with LQTS which was the culprit of these events. I started CPR and he was shocked 3 times by paramedics. He was put on the Artic sun protocol and his brain damage that he was starting to show signs of were gone. He had an AICD implanted and is now a "new normal boy". We are looking to find others in our area that have experienced LQTS or sudden death as well. We are looking at starting a mini social soccer program for kids in our area who arnt allowed to play contact/ competive sports. This would be an organized social get together with jerseys so the kids feel they belong to a club but will be for fun with no winners, a soccer clinic like league that would meet 1-2x per month starting next year. Ambulance and EMT volunteers at each get together. If anybody can help us find others like us or can we put a flyer out to be posted on your web site that will be easily noticed. Also if you could let me know if there is a contact person locally that would be great. Please contact me at
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or cell phone 585-615-2722.
Thank you,
Rebecca Knowles
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