Hi! My name is Nicholas Arruda. I am 15 years old and I am from Johnston, Rhode Island. I live with my dad, Raymond and my mom, Julie. I have a 13 year old sister named Emily and a one year old Yorkshire Terrier named Chloe.

I have CPVT (Catecholaminergic Polymorphic Ventricular Tachycardia). When I was 5 years old running around my grandfather’s office with my then 3 year old sister Emily, I collapsed on the floor. My Uncle Pete called 911 and my uncle and my dad did CPR on me. I woke up before the ambulance arrived. I was brought to the hospital and stayed there for a few days. At first, they thought I might have had a seizure, but then they realized it was my heart. I started seeing Dr. Sara Ford from the Pediatric Heart Center in Providence, RI. I was told I had ectopic atrial tachycardia. I was put on a beta blocker. I did not have any other episodes for 6 years.

When I turned 11, we decided to take me off the beta blocker because I had no symptoms. My parents asked for me to have a stress test to make sure I was ok without the beta blocker. I was on the treadmill for two minutes when my heart rate went up to 300 beats per minute. They stopped me immediately and realized I had to be on a beta blocker and add another medicine called flecainide. I had to be admitted into Hasbro Children’s Hospital in order to start flecainide. I also have a cardiologist name Dr. John Triedman at Boston Children’s Hospital. I was genetically tested and found out I have CPVT. My parents and sister were also tested and they do NOT have it.

Since then I have had two heart monitors implanted and I even went to the Mayo Clinic in Minnesota to have Left Cardiac Sympathetic Denervation (LCSD). Currently I am still taking 40 mg of nadolol two times a day and 100 mg of flecainide two times a day. I am not allowed to compete in any competitive sports and I have to take my AED with me when we know I am going to be a bit more active. This is one of the biggest challenges I have had. It stinks that I always have be careful of how active I am. 

There are MANY positive things that have come out of diagnosis. I am a big New England Patriot’s fan and I was able to get a Make-A-Wish in the summer of 2016. I chose to meet Tom Brady. My family and I got to meet him and take a picture. I also got a signed jersey and picture. We even used our picture with Tom Brady for our Christmas card that year! I also was able to get seats to see Maroon Five by Do It For The Love Wish Grant. I was able to work at Rob Gronkowski’s Sports camp this past summer and Julian Edelman’s Sports camp too. I was able to get pictures with both of them. I also was able to meet Patrice Bergeron from the Boston Bruins at a Make-A-Wish Event. 

I love to watch football. We have Patriot’s season tickets so I always go to a few games each year. I currently am a manager of my high school’s Varsity football team. I go to Lasalle Academy in Providence, Rhode Island. I am currently a Boy Scout with the Life Rank in Troop 1 North Scituate, Rhode Island. I like to spend my spare time playing X-Box, watching YouTube videos, and spending time with my family.

We have also attended three SADS Conferences. We went to San Diego, Toronto, and this last one in Atlanta. It was a great experience for myself, my sister, and my parents.

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