For Anyone That Still Have No Answers

Just over two weeks ago my healthy 19 year old niece in-law with no history of siezures nor family history suffered one during her sleep. My nephew was awoken to strange sounds and when he looked over he found his wife was "gasping", "jerking", eyes wide open staring straight ahead. He jumped out of bed flipped on the lights and saw she was having a siezure. He ran over got her on the floor and turned her on her side, shortly thereafter she suffered a massive heart attack in which she actually died. My nephew started CPR (got her heart to start beating and start breathing again) and called 911 and 10 minutes later the ambulance arrived. Knowing what we know now, which you'll know by reading to the end, she is alive because of him and his quick thinking. Once at the hospital she continued to have seizures. She was on life support for 7 of the 14 days, during that time they ran blood, to screens, EKG's, ECG's and nothing was showing up as to why this happened. They hooked up a EEG to monitor her brain activity, which had a live feed and Neuro specialists from around the world were trying to figure this out. We had top Cardio specialist and everyone was still baffled. After 7 days she woke up and now it was time for the MRI. Well the MRI came back normal. On the 8th day there was a breakthrough from the EEG. She has a rare heart condition that mainly goes undetected until it's too late. She was diagnosed with a rare heart condition called Long QT Syndrome. Unfortunately, most people are diagnosed with Long QT when it's too late because of the high rate of sudden cardiac death. You hear all the time about perfectly healthy and fit adults suddenly die. Long QT Syndrome is typically hereditary, however, you can aquire it later in life depending on specific circumstances. Currently there are 15 different types/variations of this disorder. There are so many people out there that have been misdiagnosed with Epilepsy and other seizure disorders, some for years before they are correctly diagnosed with Long QT. Some may still be unaware that they have Long QT Syndrome. I have seen so many people post in different forums trying to find answers as to why they had a siezure and doctors can't give them answers so they are diagnosed with a form of epilepsy or other type of siezure disorder. I'm not suggesting to anyone that this may be what you, a family member, even a friend may have, however, it's certainly something to look into. Now, the best news of all is...... I am happy to report she had surgery on Friday to insert a implantable cardioverter defibrillator (ICD) and she was able to come Saturday in the early evening!