Good news

We found out some good news today. The genetic testing that I did back in June came back positive. They were able to isolate the genetic mutation that I have. (It's a protein called Tropomyosin.) This is really good news. Right now medical science has only found about half of the genetic mutations for cardiomyopathy. So it was about 50/50 if they would be able to locate mine. Thankfully, they did. Now we can go about systematically testing the family to see if anyone else has the gene. The first step is to do Alex and Noah, my three nephews and my parents. The scary thing is that if you have the gene, you have a 50/50 chance of passing it on. So chances are that there are others in my family who have the disease without knowing it. We're testing the boys to make sure that no one other than Noah has it. We're testing my parents to see if we can determine which side of the family it came from. If, for example, it came from my mom's side, then we would test her brother and sister, and then if any of those came back positive, then their kids and so on. So we could potentially be testing a LOT of people. The awesome part is that everyone will have a definitive "YES" or "NO." They will know how closely they need to be monitored and if they have to monitor their kids, or if they can breathe easy. Which is huge. Hypertrophic Cardiomyopathy is a scary disease. It's the number one killer of young athletes. You can look totally normal, act totally normal, and one day, just fall over in cardiac arrest. (What happened to me.) So KNOWING is HUGE.

So, all of you prayer warriors out there...I need you to pray again. God has totally been one step ahead of us in this whole process. We prayed for clarity...and this situation gets clearer every time we see or talk to a doctor. Now we need to pray that this disease is NOT present in the rest of my extended family. God is bigger than statistics. So what if, statistically, at least one of my nephews, an aunt or an uncle, and several cousins SHOULD have this disease?? Let's pray for "NOs" across the board. Let's pray that only Noah and I have the gene. Let's pray for God to show up (again) big time. He keeps blowing us out of the water. He keeps proving time and time again that He is here, He's listening, and He loves us. This time it was in the form of a positive genetic test--we have more clarity and the ability to gain even more clarity on who is affected. Now we need God to show up and give us negative tests.

Thank you for your prayers and your love!

By the way--Noah goes this Thursday back to Children's for an appointment with the cardiomyopathy group. He'll see a geneticist, Dr. Tobin (one of the heads of the whole department) and an elecrophysiologist. Hopefully we'll find out more about Noah's status then and I'll have more updates!