We finally ordered Mason's AED. Thank you to all that donated and helped us be able to purchase this for him. You are all lifesavers, literally.
Any leftover funds or future donations will be in an account for medical needs.
We are currently pursuing genetic testing for Hunter, our 13 year old. He also showed a prolonged QT wave on his initial EKG. This test is not conclusive and genetic testing needs to be done to determine whether or not he actually has Long QT. We are unsure at this time if insurance will pay or not. There are two genetic testing companies that we have worked with. The first one, Familion, denied Mason's. We were then picked up by GeneDX who covered Mason's test. However, this is not an option for Hunter as we have been notified that GeneDX made an error and they do not actually accept our insurance. They had already started Mason's testing when they realized this. They finished his testing as a courtesy, for which we are grateful. However, this means we are back to Familion to try to get approval for Hunter. Hopefully, based on the fact we have one child positive already, they will approve the test. If they deny it, we will have to pay for it ourselves. Any future donations may be used to assist with this expense, as genetic testing is very expensive.
Once we receive Hunter's test results we will know how to proceed with the rest of our family regarding testing. I am the only common parent for Hunter and Mason. This is a dominant gene disorder so if Hunter is positive, they will know that I also have Long QT syndrome. If this is true then our oldest two children, Jordan (19) and Zachary (17) will also need to be tested. If insurance refuses to pay, this can become very expensive to test so many people.
Each person that is positive will need their own AED to keep with them, and so we may need to raise additional funds in the future if this becomes a necessity.
Please pray for our family if you are a praying person. Thank you so much for all the prayers, support, and donations we have already received. We will forever be grateful.