Name: Justin Price
Age: 4 years old
Which SADS condition do you have? Brugada Syndrome
When were you diagnosed? He was diagnosed one week after his first birthday (April 2016) after going into cardiac arrest at home.
How are you treated? He was treated with an ICD, propanol and cilostazol. He had an ablation August 2018.
How were you diagnosed?
Justin was diagnosed a week after turning 1. On his first birthday at his one year check up, the doctor heard a murmur and said it could be nothing. A week later I put him to bed and a few hours later he woke up screaming. His nose started to bleed for no reason, so we rushed him to our local ER with a heart rate of 303. They immediately transferred us to children’s hospital of Philadelphia, and based on his EKG, he showed full blown Brugada. It wasn’t until his genetic testing came back, did we find out he has four different mutations of Brugada Syndrome. With further genetic testing it also came back the whole family has Brugada. Yes that’s right, both mom and dad and his older sister.
What is one positive thing that has come out of your diagnosis?
His diagnosed ended up saving his family. Neither of us knew we carried this gene.
What does your day-to-day life look like?
Our day to day life as first was crazy. We bounced back and forth from home to Children’s Hospital of Philadelphia (CHOP), living in slight fear from several cardiac arrest. Justin had an ablation in August 2018 which gave him the ability to be able to live the amazing life he has now. We are truly thankful for his team of doctors at CHOP.