Campaign Story

My name is Skylar and I have a genetic heart condition. When I was diagnosed with this Long QT Syndrome Type 1 I had to stop participating in sports. This diagnosis means that I am at risk of going into sudden cardiac arrest. If I were to get pregnant naturally there is over a 50% chance of me passing on this condition to my future child. I have to take medication daily, have a defibrillator put in body (prior to this I had to wear a defibrillator under my clothing), and need surgery to replace the battery every 5-8 years. If I could prevent this for my child I would do everything in my power to ensure that they are healthy. I do not wish this upon anyone and want them to give them the best opportunities as I possibly can. After further discussion with my doctors the only way to 100% know that my child will not have this condition is through Pre-genetic Implantation Testing and IVF. I understand not everything is preventable and that some people may find this to be an extreme measure but after living the situation first hand I want to take this extra step because I would not be able to accept if I knew I was the reason my child suffered a cardiac episode. I just want to try to set them up as best I can to have a normal, happy and healthy childhood.

Thank you for taking the time to read this!