#Superhuertafamily Timothy Sndrome

Having two very sick children and your spouse  is hard enough in every aspect, emotionally, physically, financially it is all so draining and most of the time you feel like you are drowning. My family has been diagnosed with long QT 8 also known as Timothy syndrome, a serious arrhythmia condition that can lead to heart failure and sudden death. My 9 year old son was first diagnosed then my 2 year daughter and their father. They were diagnosed for type 8. It is related to Timothy syndrome named after Dr. Katherine Timothy. We have to travel to Stanford every six weeks and have been since January. On May 13th, my youngest daughter hade her first attack and fainted in our living room. She was transferred from kawaeh delta hospital to Stanford in the ambulance. She then hade a ICD placed to protect her heart, on May 18th. When they saw her heart they noticed her right side of her heart was very thin and hade a lot of scars on her heart, and whiteish. They have never seen this in someone so young before. On September 9th 2016 he dad hade his heart Surgery, he hade a ICD placed in, he also has cardiomyopathy, his health was getting worse. This caused him to lose his job as a welder and a mechanic. Fast forward to January our 9year old son hade his heart surgery ICD placed in, they saw the same thing they saw on our daughters heart, the doctors are lost. It is scary to know that even the Doctors are at a lost From what they see in our children's heart. Our next step is for us it to make to meet with Dr Ackerman at the Mayo Clinic.  We still travel to stanford every 6 weeks for treatment. Dad is still looking for work. We have a long road a ahead of us but with we do know. with God beside us anything is possible. 
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