Can you tell me a little bit about your SADS journey – from diagnosis to where your family is today?
It all started in September 2019, when my son, Ruben, was hospitalized – that was the first time we ever heard of Brugada Syndrome. He had a lung infection, and his EKGs were showing the Brugada pattern. After he was released, he followed up with the electrophysiologist he saw at the hospital. Because we didn’t have a family history that we knew of at the time, the doctor decided just to monitor him – in case it was a freak event.
He had a few more hospital incidents in 2020, and again, the Brugada pattern showed up on the EKG. That’s when they decided to do genetic testing – at that time they only tested for Brugada. A genetic mutation showed up, but it was a variant of unknown significance. The cardiologist decided to monitor him, see him every six months, and intervene only if he had other episodes.
In 2021, Ruben got sick with COVID and ended up on a ventilator. We didn’t know that there were medications he shouldn’t and couldn’t take due to having Brugada Syndrome at the time as no one ever mentioned it to us. After coming off the ventilator and recovering from COVID he went back to being and feeling like his normal self again. In December of 2021, he was doing well again, and went for his six-month checkup with his cardiologist, who suggested that it would be a good idea for the whole family to get genetic testing done. However, it fell through the cracks, and we did not do the genetic testing right away. Again, not realizing how serious Brugada Syndrome could be.
In May of 2022, he was acting and feeling great, not complaining about anything, and getting ready to go to the police academy to become a sheriff’s officer. One day we hadn’t heard from him all day which was very unlike Ruben not to communicate with us daily, so right away we knew something wasn’t right. We rushed over to his place and unfortunately that’s when we found out that he had suffered Sudden Cardiac Death.
On his autopsy, his cause of death was listed as a cardiac arrhythmia due to Brugada Syndrome. After his passing is when we found The SADS Foundation and we decided to get genetic testing done. After undergoing various tests and procedures, we found out that our daughter also inherited an arrhythmia condition called Long QT Syndrome. Had it not been for us finding the SADS Foundation and all of their help we might have never found out about our daughter’s condition as well.
I’d love to hear a little more about Ruben. What was he like?
Ruben was a very loving and caring young man with a great big smile and even bigger heart. He loved his family, friends, his precious cat Pyra and sports. There was nothing he wouldn’t do for the people he loved. Ruben loved baseball – he’d been playing since he was about 5 years old and was very athletic. This diagnosis hit him out of nowhere because he was always very healthy and extremely athletic.
Ruben graduated from Felician University with a degree in Criminal Justice in 2019 and had taken the test to become a police officer shortly thereafter to follow his childhood dream.
He was very kind and always wanted to help everyone else. I miss his smile his big heart and all his jokes – he was a big jokester, and he and his sister liked to play tricks on me a lot.
Can you tell me a little bit about the event you held in memory of Ruben for his 26th birthday?
This fundraiser was held on February 19th – Ruben’s 26th birthday, which also happens to be Heart Month. It was held at The Tap and Growler in Sayreville, NJ – and was held to raise funds and awareness about SADS conditions. It was like a tricky tray type of event – we had donations from family, friends, colleagues, and local businesses, and made baskets, which were raffled off. We also made shirts, and bracelets that we sold. The Tap and Growler also donated a portion of all the sales for the day to the SADS Foundation in honor of Ruben.
We had a lot of local people come and ask about arrhythmias and sudden death, wanting to learn more. Some had never heard of Brugada Syndrome or the SADS Foundation. We gave out SADS pamphlets, so that others could continue to learn more. We even connected someone with SADS to help her get an AED for her family, which we learned to do for our daughter through the SADS Foundation as well.
Is there anything you would want to say to other families who have recently received a SADS diagnosis?
If something doesn’t feel right, question it. Don’t just settle. Follow your gut feeling and go for a second or third opinion.
We have to be our own advocates – and fight for ourselves and our family. Especially when a young person goes into a doctor complaining about chest pain, it’s often dismissed and diagnosed as anxiety and stress.
How has the SADS Foundation been helpful for you and your family?
The SADS Foundation has been helpful for me and my family in helping us obtain an AED for my daughter to have with her at all times. They have helped me learn about different SADS conditions. I’ve learned a lot by watching the SADS Live episodes with Dr. Michael Ackerman. I love that SADS talks about AEDs, CPR awareness, and all the different types of conditions. I always get a quick response from a staff member when I email – which is really helpful. I also learned about Brugada Drugs to Avoid and CredibleMeds from the SADS Foundation. These resources have been very important to us and extremely helpful. The SADS Foundation has helped me know that we are never alone in our journey.