Everyone has followed Hunter and I’s journey with the twins, Wilder’s particularly extensive one. We’ve known for a while that Wilder is special, we’ve been searching for answers hoping we can find the source and be able to help him. Wilder had heart surgery at 3 months old due to a large hole in his heart. We had hope after this surgery the issues he had would be solved. Sadly the issues have persisted meaning our search has also. After countless specialists and tests not having any real answers, last October we started the process of generic testing. His first genetic panel came back normal, we still needed answers. His genetic doctor chose to dig deeper and do an extensive genetic panel. We’ve waited for months for the results and this week we finally received the answer we’ve been desperately searching for. Wilder is a very special boy. He has a 1:1 million condition known as Andersen-Tawil Syndrome. This is a rare condition that affects the electrical impulses of the heart. For those that are familiar with heart function; this is also know as Long QT Syndrome. There are not many cases of children diagnosed with ATS. Symptoms do not usually present themselves as early as they have with Wilder. Not impossible, but rare. Wilder also has all the facial features and symptoms associated with this syndrome. (Small mandible, wide set eyes, wide bridge with bulbous nose, low set ears, mild learning disabilities and many other features) It’s not a diagnoses we were expecting, but it’s a diagnoses that gives us answers. Last December, Wilder was hospitalized due to (what we didn’t know at the time) is a symptom of ATS known as periodic paralysis. He stopped having mobility of his lower extremities. This is very common in individuals with ATS and is brought on by over exerting yourself or extreme exercise. This may not be a syndrome completely life changing to Wilder at his age currently. However, the older he gets his lifestyle will look a little different than someone of his age. The possibility of him eventually needed a defibrillator or pacemaker is there. As much as our hearts hurt fearing for our wild guy, the relief we feel having answers is huge.
We have decided to participate in this years American Heart Association Heart Walk in honor of our Wild Guys fight. We would absolutely love any of our friends and family to join our team and walk with us. He’s our little Heart Hero and we are ready to do anything we can to support him and show him just how loved he is by us and so many more!
If you’d like to walk with us to help support Wilder and many others this walk will help raise fund for, please join our team #Wild@Heart
