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Will was 6 years old when he first experienced a fainting episode. He was walking up the hill with his dad & sister one day from school when he fainted. We couldn’t tell if the kids were making it up & playing a joke on dad while I was at work. The next morning he fainted again. I work for a private practice as a Nurse. Will’s general practitioner (GP) wasn’t taking chances, so I collected him for a cardiograph. She sent it away for formal interpretation.

Monday morning I walked in to work my shift and the doctor called me in to tell me this was serious. The results came back as Brugada Syndrome and the doctor explained how dangerous this could be for Will. The drive back to tell my family and pick up Will to take him to emergency was spent fighting back tears. We waited all day for the cardiograph to be reported on by a specialist at another hospital. Nope. The doctor told us it was alright to go home since the specialist said it was okay. My gut feeling wasn’t good. At work I told Will’s GP I wasn’t feeling confident and she agreed. She referred us to a specialist at Westmead Children’s Hospital. We were all sent for cardiographs.

I had been a Cardiac Nurse for many years; unfortunately I knew what I was looking for on the cardiographs that were handed to me to walk back to the specialist. I felt sick. He promptly informed us William had Brugada Syndrome and so did I! He then referred us to the appropriate specialist to deal with this. Whilst waiting Will developed a fever. We had been told this could cause a fatal heart rhythm in Brugada patients.We were transferred to Westmead hospital via ambulance. During a 2-3 week stay, Will had a myriad of tests & consults. We both have loop recorders now monitoring us remotely. I began informing family about the rate of passing it on, which was 50%. My nephew, now diagnosed, is 14. We don’t know if our other 2 children have this.

Our biggest struggle was educating others, as nobody knew what this was! Not even the doctors and nurses we came across. We had to convince Will’s school to fundraise for a defibrillator because there was no other assistance. We had to approach the education department because the school struggled to understand just how important a defibrillator was in saving our son’s life. Not friends nor family. We then raised $2,500 to buy our own defibrillator so we could at least feel safe.

Each year we have a new teacher to explain what Brugada Syndrome is, and they typically look at me horrified. The play dates & sleepovers he misses because the parents are reluctant. We are understanding and every day is a challenge, but we try to stay positive never knowing what our future holds. We stand on the sidelines hoping all will be ok so he can play soccer in the plight to help him feel normal. The loop recorder makes him feel “different;” he struggles & will see a psychologist next week. We know we are luckier than many with this condition.

Please share in the hope for a cure! We love our Will & we hope for a future with all our wonderful children.