Can you tell me a little bit about your family’s SADS journey – from diagnosis to where you are today?

Our journey starts with my husband’s daughter, who was having cardiac symptoms. The doctors didn’t know what was going on, so they did genetic testing, and found out she carried one of the mutations of Brugada Syndrome.

At that time, my husband and I had one son – Daniel – who was tiny, probably only four or five months old at the time. And we live in a really rural area – in Humboldt County, about two hours away from Oregon. We’re very isolated out here.

I got the phone call from my husband, and he said, Hey, we need to get Daniel checked out. He said his daughter was very sick, in the hospital, with a genetic condition. So we took Daniel to our local cardiologist, who looked at the EKG and echocardiogram and said everything looked fine. He said he’d send the EKG out to his colleague at UCSF – and after that, we got a phone call saying that we needed to bring Daniel to UCSF for further testing since his EKG did show up abnormal. They did more tests as well as genetic testing and sure enough, they said he did have the SCN5A Brugada Syndrome gene like his father.

At UCSF they did a family history and discovered there were people in my husband’s family who died very young and suddenly as well as others with heart issues. We’d never thought the deaths could be linked. They did genetic testing on Daniel, and he has the same Brugada mutation as his dad. They told my husband that it was very important for him to keep up with doctor’s appointments, but my husband was in denial at the time, felt healthy, and had no symptoms – he didn’t see the need, and was more focused on his daughter getting better like any parent’s focus would be.

About two years later, my husband’s daughter – Daniel’s half-sibling – passed away suddenly. That was a hard hit, and my husband lost trust in medical care, and got skeptical. But I really pushed to keep having Daniel seen. Every six months, I’d take Daniel to the same amazing doctor at UCSF. Daniel’s now 12 years old, going on 13. He sees the same doctor, is healthy, and has few restrictions.

A few years later, I was pregnant with Ruby. I knew we needed to think about whether she’d have Brugada Syndrome, so we started monitoring her while I was pregnant, and she started going to UCSF at the age of two months old; they did genetic testing, EKGs, and echocardiograms. Just like her brother, she also inherited the same gene mutation as her father.

Ruby is a happy and healthy girl, very lively, and loves to be in all sorts of activities and sports – she’s very social! We just have to be on top of it if she gets sick – like any other child with Brugada Syndrome, we really control her fevers. She gets febrile seizures if they’re too high.

I continue to monitor my kids, and check in with their doctor, and educate their school system. Education is so important, especially in our rural area – every time we see a doctor, or go to the ER, they think of Brugada Syndrome as something that only affects older people. My kids also each have their own AED, and their teachers know how to use it just in case.

My husband passed away at the end of December in 2018 of a Sudden Cardiac Arrest at 34 years old due to Brugada Syndrome. His death was a real eye-opener; he didn’t think anything would happen to him since he didn’t have symptoms, so he didn’t go to the doctor. So even if you feel okay with one of these conditions, it’s super important to do follow-ups with your doctor and follow the directions of the specialists.

How did you and Ruby get involved with the SADS Foundation?

I started searching for community platforms online where I could find others that have similar diagnosis like my children. I wanted to find others that understood what it’s like to have children living with Brugada Syndrome, as well as a place I can get the most up to date information. That’s how I came across the SADS Foundation.

I’m so glad that we found the Project Sunshine Rare Disease TelePlay program through the SADS Foundation. We don’t know anyone else in our rural area who has Brugada Syndrome, and it’s awesome for Ruby be able to connect with other kids who have rare conditions. Ruby really enjoys it. And she really looks forward to the different topics they have – like trivia – every month.

Ruby was selected to be featured at Project Sunshine’s annual gala video, and will join them in NYC this May to speak at their event.

What advice would you give to other parents who have recently had a child diagnosed with a SADS condition?

It’s important to remember that each child is different. Tune into what your child’s need are, ask as many questions as possible to your providers, and make sure you’re on top of making appointments. And I feel like knowing your family history is huge. Sometimes it’s a warning sign. You don’t always connect these things – like, oh, my auntie passed away at a young age, or someone else in the family suddenly passed away young too. We don’t question those things, we just think it’s part of life and these things happen, but sometimes you need to dig a little deeper. So getting to know your family health history is very important.

Back in 1992, I was diagnosed with a condition called Long QT Heart Syndrome. Doctors discovered it through medication interactions, which caused a cardiac arrest. Doctors didn’t know as much about the condition back then, and I was actually in a coma for a couple of days before they thought to look for LQTS. At that time, I was told that I had tons of restrictions – which came from a lack of knowledge on the doctor’s part.

Unfortunately for my family, we didn’t know enough about LQTS to know it was genetic. At that point, we just thought it was medication-induced. And in September of 1994, my grandmother passed away from LQTS after being given a QT-prolonging medication. We didn’t know she had a SADS condition. After that, we had family genetic testing done. After I had my three daughters, we had their cord blood tested, and one of my three daughters also has LQTS.

One of the biggest challenges I faced after diagnosis was the lack of knowledge. To be 18 years old – a senior in high school – and to have this scary heart condition, and then to be told you can’t do sports, and have to be careful with every single little thing you do – that’s really hard. The following August, I went to college three hours away, with doctors that weren’t my diagnosing doctors, and that was hard too.

If you’ve just been diagnosed, I’d encourage you to read about the condition, but also take anything you read with a grain of salt, because 90% of online stuff is going to represent the worst-case scenario. It’s scary enough to get this diagnosis without reading worst-case scenarios! You’ve got to find people and places that have good information, and find facts more than emotion, which is really hard – because when you’re first diagnosed, it’s all emotion. Get involved with your heart community, because that’s where you’re going to find the people that will help you find good information.

The SADS Foundation gave my family the knowledge that my LQTS might be genetic and not just induced by medications. And then it helped us after my grandmother passed away to start asking questions. Without SADS, I also would never have known about CredibleMeds. When my daughter (who’s now 14 years old) got her first phone, the very first thing I downloaded for her was the CredibleMeds app.

And when we went to the SADS International Family Conference in Ann Arbor, by talking with other parents, doctors, and SADS staff, I discovered that I really should have a 504 plan in place for my daughter – a medical action plan. Talking with other parents helped me learn that it was good to advocate and be assertive, and I pushed her school to get a 504 plan in place. For any parent, that helps so much with peace of mind.

Over the last two years, the SADS Foundation’s SADS Live program with Dr. Michael Ackerman have been phenomenal. I’ve said to many people, with what other condition can you get access to one of the world’s preeminent experts, hear what they’re saying, and ask them your questions as they come up? That’s huge.

When Joelle was 12, she passed out in church – and testing revealed that the culprit was ARVC. And it progressed quickly – a year after diagnosis, at 13, Joelle got an ICD to help regulate the “electrical chaos” in her heart.

Joelle had been a competitive figure skater before her diagnosis, and returned to the rink after her ICD implantation while being carefully monitored by her doctors. But it was hard for her to compete, and just a few months later, Joelle went into heart failure – and required a transplant.

She spent 48 days in the hospital before receiving a donor heart, and the transplant at Mayo Clinic was successful. Six weeks later, she was able to get back to the rink – and now competes as a figure skater again. Joelle now wants to go to med school and become a surgeon when she’s older, specifically pediatric cardiology.

“If it wasn’t for my donor and their family, I wouldn’t have received this heart, and might not be here today,” says Joelle. “it completely changes your life – it’s amazing.”

We spoke with Holly, Joelle’s mom, about the heart transplant process, and her advice for other families.

What challenges did Joelle face after diagnosis?

From my perspective, some of the biggest challenges were mental challenges, including being told that Joelle’s activity would need to be limited. She was a junior high athlete at the time, and very competitive. Her sports were her drive, and to be told that she had to stop playing volleyball and basketball, and stop figure skating, was difficult for her to hear. Dr. Michael Ackerman, her doctor, was very sensitive to her mental health, and allowed her to continue to skate while being supervised and educated about her limits so she could enjoy life safely.

What would you want other ARVC families to know about the process of heart transplant, especially for a young person?

Make sure to educate yourself! Everybody’s journey is different, and patience is very important, even though it’s frustrating to be patient. It pays off in the waiting process – while you’re waiting for a heart – and during the healing process. You have to be willing to deal with the deck you’ve been dealt, and just go with it.

Not only is the transplant process challenging for the patient, but it is also challenging for the caregiver. It’s important for the caregiver to take care of themselves. And make sure to take advantage of the time you’re in the hospital with your child. Although you’ll be well-prepared for discharge, you won’t truly know the challenges you will face until the time comes.

This process can be long and exhausting, and allowing your child to be both educated, and be a part of the decision-making process, is instrumental to success. 

What advice would you give to other parents who have recently received an ARVC diagnosis?

Make connections with other people. Dr. Ackerman connected us with another patient going through something similar, and that was our success. They helped educate us, and helped us learn more about the process. They were able to give us advice, be someone we could bounce things off of, and were there when we needed to vent. That’s what you need the most – a support system.

I was lucky – I was diagnosed at birth. The doctors knew something was off with my heart rhythm when I was in utero, but the technology back then wasn’t advanced enough to know more than that. I was in distress when I was born, and I was born with heart block along with my LQTS Type 2. I was really fortunate to have pediatric cardiologists on the other side of Ann Arbor who knew about LQTS. I was zipped across town a few hours after I was born, and given my first temporary pacemaker. A couple days later, I was given my permanent pacemaker and started on a beta blocker. I’ve had the same course of treatment my whole life, and had an ICD/Pacemaker implanted in my early 20’s.

Things have come full circle with my daughter, Gabby, who had a similar presentation when she was born – she had heart block, and her first device put in right when she was born. But we knew a lot more this time around.

When I was growing up, the SADS Foundation was the only resource out there for families with LQTS. In the 1980s and 1990s, there wasn’t an abundance of information about LQTS – I remember my mom telling me that when they started learning about it, after I was born, they asked the cardiologist for all the medical journal information they could find. And it was only a handful of articles – they were able to print out every single article that existed. The SADS Foundation was a good repository for them.

A few years after my husband Brad and I moved to Michigan, the SADS conference was in Ann Arbor. I went to the conference and got reconnected. I was starting to have questions about having a child, being pregnant with a SADS condition, and what it would look like for the baby if she had it. I got connected to Alice, and I was able to meet other people with my heart condition face-to-face, which was pretty special.

After the conference, I emailed Alice directly about pregnancy and SADS conditions; I was hoping I could talk to somebody who’d gone through the experience. She responded very quickly and immediately connected me to a couple individuals who were really generous and shared their stories with me. Their openness about their experiences allowed me to feel confident about my decisions.  They were so important to me during pregnancy, and I still consider them friends. 

I started volunteering to be part of the Community Engagement Committee when I went to the conference in Ann Arbor. I was talking with volunteer Jen White and Alice about a research proposal – I have a history in clinical research and grant work – and we worked together to put together that application. That was the gateway to other activities. I like being on the CEC committee, and giving a little slice of the knowledge that I have to the SADS Foundation.

I’m also a facilitator for the SADS Foundation’s ICD Support Group. It was an honor to be asked to lead the group – I was very flattered. Even though I’m a facilitator, I’m also very engaged in the conversation, and it’s been a very powerful experience for me. It’s become a sacred time each month that my husband and I work very hard to block off.

It’s hard to describe what the feeling is when you find someone who’s going through the same challenges that you are. It’s validating. We all have different backgrounds in the support group – we have different communities and families, but we have that one unifying thing. And for many of us, that was such a pivotal moment in our lives, when we learned we were going to be living with an ICD – or woke up with one in our chest. It’s pretty cool that SADS was able to bring this group of people together and provide a platform for these discussions.

One of the reasons that I am active with the SADS Foundation is that I was grateful for those who were open with me, and I hope that my own experiences can help someone else who may feel like they need it. If you’re interested in getting involved, the SADS Foundation is a small organization – even though it provides a lot of information and resources, it’s very personal and personalized. Reach out to any individual person you find on the website and they can find the right activity for you. It’s easier than you think to get involved!

Are you interested in becoming a volunteer at the SADS Foundation? Click here to get started.

How did you get involved with the SADS Foundation?

I was at the University of Colorado in late 1999, finishing my residency in internal medicine. In my third year, I was a genetics and cell biology major. I designed a rotation where I could go out to genetic clinics – including one that was studying what we called, at the time, ARVD (now known as ARVC). We were trying to refine the locus – it was locus number three of the ARVD locus on chromosome 14. I was trying to find the gene that the disease was linked to in families with this condition. During this time, I heard about the SADS Foundation – but I actually knew about Dr. Michael Vincent before that, when I was at the University of Minnesota in medical school.

I did an elective in medical genetics at Mayo Clinic during medical school, and saw a lot of patients with SADS conditions. At that time, I was planning to go into a pediatrics residency, but after that rotation in medical genetics at Mayo, I decided to focus on genetics in adults. I heard of Dr. Vincent, and read his articles, during that time. I also met him at the American College of Physicians, and he was so passionate about researching these diseases.

In my very last rotation of medical school, I worked with a cardiologist named Dr. Naip Tuna at Regions Hospital in St. Paul. He started me collecting electrocardiograms, including one of Brugada Syndrome. Dr. Tuna would say, “Carl, if you do not think of the condition, you will not diagnose the condition.” If you don’t know about conditions like SADS, and don’t have the curiosity to learn, you won’t be able to identify these rare conditions.

The first SADS conference I attended was the second national conference in Atlanta, and I went to the conferences in Salt Lake and Chicago too. I’ve always had an interest in these genetic heart conditions, despite being a general primary care internist, because of those research projects in ARVC and my time with Dr. Tuna.

How, and why, did you get involved in advocacy work?

Because of my genetics background, I’m interested in rare diseases in general. These past two years, I’ve been doing advocacy with SADS and the EveryLife Foundation for Rare Diseases. The two legislative “asks” I’ve focused on are the Access to Genetic Counselor Services Act, as well as telehealth expansion (which is important not only to rare disease patients, but also to patients who live in rural areas). I’ve also done advocacy day with the American College of Physicians.

We often think of rare diseases as very uncommon, but when you add all those rare conditions together, 1 out of 10 Americans have a rare condition. Collectively, they’re very common.

What advice would you give to someone who’s interested in doing advocacy volunteering?

Groups like the EveryLife Foundation help prepare you in the week leading up to the advocacy day. The preparation doesn’t take a lot of time or effort, especially now that everything is digital – they’re on Zoom, and you can do them very quickly. And if you can’t attend, you can always watch afterwards.

And all advocacy is not on a national level. I’m interested in community education and local advocacy, too. Even if you’re not interested in the political side of things, you can also be an advocate through approaching your local media and getting in the paper, or advocating on social media. If you want to do advocacy at a national level, I would recommend getting a little bit of training – it helps you refine your elevator pitch.

When you do Rare Disease Day, there will be lots of people with lots of different diseases asking for legislative support. It’s important to learn how to tell your story quickly, since you don’t have a lot of time.

Are you interested in becoming a SADS Advocate? You can sign up here.

When I was 14, I starting blacking out and have seizure-like activity, and we saw different specialists, but they couldn’t figure out what was causing the seizures. They did a bunch of different tests – MRIs and CAT scans – which all came back normal. Because of my age, they didn’t think to look at my heart.

The doctor I was seeing just happened to put me on a medication that had an anti-arrhythmia in it. That kept my heart under control when I took it properly, but because I was a teenager, I didn’t always take my medication like I was supposed to. And when I missed my medication, I would have episodes.

I got pregnant at 19 with my oldest child, and because the medication was dangerous for me to take when I was pregnant, I came off of it. And I had another episode. Usually it would be about a year between episodes, but this time, as I was coming out of it, I felt like I was going to have another one on the way to the ER. As soon as I got hooked up in the ER, I asked the nurse not to leave me – I knew something was going to happen. She said she was going to get the doctor, and as soon as she closed the curtain, I coded.

From there, they figured out that I had Long QT Syndrome. Two days after being diagnosed, I was scheduled to have an ICD implanted. I was in the ICU for eight days recovering from the cardiac arrest and the surgery. But after that, I’ve had a pretty normal life. My medication and device have kept things under control. Both of my kids have been tested for it, and they’re being monitored by a doctor.

Right after my diagnosis, I was depressed and anxious. I was worried that it was going to happen again, and worried about my children. It was always constant worry hanging over me. But slowly I learned to change my mindset and not sit in the fear, because it will consume you. You have to find a way to live with the fact that you could have another episode – while still living your life.

If you have symptoms, don’t brush it off and think it’s nothing, because you just don’t know. And a lot of times, with LQTS, people don’t know they have it until they have a cardiac arrest. Even following up on minor symptoms could change your life. And don’t ignore these symptoms in children, either. Because of my age, when I first had episodes, they never looked at my heart. If they had covered all possibilities I could have been prescribed proper medication, had testing done and maybe prevented cardiac arrest while pregnant or needing an AICD. While it may be possible I would end up having that happen anyway, early diagnosis and treatment can make a world of difference.

If you’ve just been diagnosed, my advice is to find a community – people who are going through the same thing. It makes it easy to relate to others, and talk with people who’ve been through it.

Dr. Janette Strasburger and Dr. Bettina Cuneo were my lifelines when I was pregnant.

I heard Dr. Cuneo speak about pregnancy at a SADS conference. What really stood out to me was the possibility of non-invasively testing a baby for Long QT in utero. I knew I was only a year or two from trying to start a family, so I introduced myself, and was sure to get her contact information.

When I became pregnant, and was meeting with various maternal fetal medicine specialists and genetic counselors, I just wasn’t comfortable with all of the uncertainty. This was a great group of doctors and professionals, but I often felt like the most knowledgeable person in the room when it came to Long QT and pregnancy. So I emailed Dr. Cuneo to get her input. She immediately responded, answered all of my questions, gave me the guidance I was looking for, and connected me to a study in Wisconsin that could detect Long QT in the baby.

Dr. Strasburger met my husband and I in Wisconsin and had the unenviable role of being the one to tell us that the baby did show prolonged QT. She was so compassionate and thorough answering all of our questions. We thought this was the end of our relationship and felt so much more informed heading back to New York.

At upcoming medical appointments: prenatal check-ups, consultations with anesthesia and consultation with pediatrics and the NICU, I was ready to share what I learned. But I didn’t have to. Each of these specialists opened up my file while talking with me and showed me an entire list of background and instructions that Dr. Strasburger had shared with them. Everything from do’s and don’ts with various medications, what to look for regarding the baby’s heart rate, and the use of magnesium or calcium and other clinical implications that fly way above my head.

I finally felt like my care team was prepared for me and my baby. Dr. Strasburger made herself available to my doctors for any questions they had, lending her impressive and rare expertise.

Years later, when I saw Dr. Strasburger at another SADS conference, I teared up a bit as I hugged her and introduced her to my parents. We’re all so grateful to her and Dr. Cuneo—VIPs in the Tolosky-Russom world.

To make a contribution to our Medical Education fund in honor of your family’s VIP doctor, click here.

“We celebrate Graeme every day in our family by persevering and sticking together, against all odds.”

Deby’s Story

I was 28 when I was diagnosed with LQTS in 1989. In 2000, we learned from my Electrophysiologist, Dr. Blair Halperin that we could do genetic testing for my children through Dr. Michael Ackerman with the Mayo Clinic. It was very complicated at that time, and costly. And just one month after we initiated genetic testing, my son, Graeme, died at 12 years old after jumping into a pool and experiencing a Sudden Cardiac Arrest. We were heartbroken.

Dr. Ackerman got very involved in our story and immediately got in touch with our family to see if we wanted to test our other two children. They were able to determine that Graeme had LQTS, as well as my daughter Marissa. My oldest son did not. We became very involved with the SADS Foundation, especially around the issue of defibrillator access. At that time, defibrillators were seen as something that could hurt someone, as opposed to helping them. We advocated around the Portland area and throughout the state of Oregon for AED use in public places. At that time, AED access was nonexistent except in healthcare settings or with EMS staff or police officers. The SADS Foundation was really part and parcel of spreading the message that AEDs are lifesaving devices –like fire extinguishers. It was an uphill battle. The school district officials would NOT let us put one at Marissa’s elementary school because they thought that the Good Samaritan Law wouldn’t cover liability if someone was inadvertently shocked, which could not happen with these devices.

It’s easy to feel paralyzed by this kind of diagnosis. You can’t see it, you can’t look at it, and you can’t tell someone has it by looking at them. If you’ve just been diagnosed, read as much as you can, and go to SADS.org to educate yourself so you can find the right medications and care. And please get treated as soon as you can, whether it’s through medication or an ICD. ICDs do feel terrible when they fire, and can be scary, but they save lives.

It’s so hard to lose a child, and that pain never goes away. The best thing we could do to honor Graeme was to persevere as a family, and come together to advocate. My parents just passed away, and the SADS Foundation was important to them as they knew it as a great tool for families living with or new to LQTS. Their donation to SADS was such a wonderful way to share their care and concern for all families living with life threatening arrhythmias. The SADS Foundation has been helpful in helping us know what drugs we can take, and which we should avoid, with LQTS. They’ve helped us in spreading awareness and understanding. If my husband and I couldn’t explain something, or answer a question, we’d always point to the SADS website as a great resource!

We have a little baby who’s just joined our life – my granddaughter. And there’s so much less fear attached to LQTS for her. There’s been so much progress, thanks to organizations like the SADS Foundation.

“LQTS doesn’t define me, but I do need to be aware of it – take ownership of that part of myself, take my medication, and educate others.”

Marissa’s Story

Right after my mom had my brother, she found out she had LQTS. That was about 30 years ago – and not much was known about it at the time. Growing up, we went through testing and EKGs, but weren’t diagnosed. After my brother passed away at the age of 12, we went through early genetic testing, and I learned that me and my brother, Graeme, who passed away, had LQTS. My older brother does not.

Once my family found out I had LQTS, it was a race to figure out how to manage it, especially since there was a lot that wasn’t known. My parents found the SADS Foundation, and that was the beginning of them learning about this condition. I was really into sports at the time – soccer and gymnastics – and my parents said that I wouldn’t be able to continue playing, and that we’d need to pivot, adjust, and find something else for me to focus on. That was really difficult for me, but my parents were amazing at saying, okay, sports are a “no”, but look at all these other things that are a “yes”!

Our beautiful baby girl, Saylor, was born three weeks ago and has LQTS. Pregnancy was challenging with LQTS – they wanted to take me off my beta blocker, but I knew that my cardiologist would say “no way,” and that I needed to be a healthy mom to have a healthy baby.

I stayed on my beta blocker, and they put me with a high-risk pregnancy doctor just to be safe. There was pushback throughout, and the biggest challenge for both me and my husband was advocating for ourselves and our baby, and feeling heard. Talking about LQTS was a constant conversation we had with our doctors. That’s the biggest piece of advice I have for other pregnant moms with a SADS condition – advocate for yourself and your baby, communicate how you’re feeling and what you know about your condition, connect your doctors with each other, and have a plan for post-delivery if needed.

Losing my brother, and seeing my mom have multiple cardiac arrests, I knew I needed to respect that part of me. LQTS doesn’t define me, but I do need to be aware of it – take ownership of that part of myself, take my medication, and educate others. If you have LQTS, I just want to say: take your medication, listen to your doctors, because you being here is so important.

We just got back last week from an appointment with my childhood pediatric electrophysiologist, who’s now Saylor’s pediatric electrophysiologist. Things have changed so much – she can play soccer and do sports.  I felt hopeful coming out of that. If we knew back then what we know today about LQTS, we might have been able to save my brother.

This Heart Month, volunteer Sandy Cowin made a huge impact through sharing her story with her local news station, Spectrum News 1, which broadcast her story and the SADS warning signs across the state of New York, and writing an article for her Employee Assistance Program newsletter, which was distributed across the State University of New York System Offices.

“I’m starting to get comfortable with sharing my story,” she says. “I’m happy to finally start contributing to awareness in my community and now I don’t want to stop!”

Her father passed away suddenly from cardiac arrest in 2009 as a result of Brugada Syndrome at the age of 65. “As anyone who loses someone suddenly knows, it’s really shocking,” she says. “He led a very healthy and active life until he died suddenly and unexpectedly, although there were warning signs for many years, including fainting during a fever.”

Sandy and her siblings were then tested for Brugada Syndrome, but their initial test came back inconclusive. Seven years later, Sandy retested as part of a clinical trial at NYU Langone Health and tested positive through a flecainide infusion.  

Her son, Jackson, a high school senior, is closely monitored as well. He’s an active runner who participates in both cross-country and track. “We are under the care of great doctors and have no restrictions on physical activity,” she says. “There are many preventative measures we can take to limit the chance of a cardiac event.”

Sandy wants to spread awareness of the warning signs – to make sure that people get proper treatment and get diagnosed early. “Don’t put symptoms aside,” she says, “because sometimes the first sign could be a cardiac arrest. I am very thankful for my diagnosis so that we get the treatment to ensure a long and healthy life.”

If you’re interested in becoming a media volunteer like Sandy, click here to get started.

Brian was a junior and on the dean’s honor list at the University of Wisconsin-Madison, studying biomedical engineering and computer science. He truly loved his college experience and formed an amazing second family away from home. We are comforted knowing he was the happiest he’d ever been especially after recently landing an internship as a biomedical engineering intern at Medtronic in the cardiac rhythm and heart failure division of all places.

Just a normal day in the life of a college student during exam week, Brian was in his apartment all day studying on and off for a test. He had been complaining of what he thought was an abscessed tooth for a day and a half. He still had one more final exam, but it became very painful. He called home complaining it was getting worse which was unusual for Brian.

I called his doctor to get him an antibiotic to help until he got home. They rightfully refused as he was too far away to be evaluated. I then urged Brian to go to the immediate care, but he thought it could wait. I also urged him to call his doctor which he did as we noticed that they were his last three phone calls.

Brian’s roommate was studying in the next room and after we contacted him, he went to check on Brian and found him sitting up in his chair, already gone. It had been a couple hours since he was last seen acting normally. We were told nothing was found wrong with the tooth or with Brian. We now suspect it was a sudden cardiac arrest.

Brian’s goal was to find a career “ to improve the quality of life for others”. He always listened to others and made them feel like they mattered. We miss him so much and think about him every day. Brian was brilliant, humble, and kind. He made a great impact on many lives. It’s still hard to believe he’s not going to walk through the door from school with a big smile on his face, dragging in his pile of dirty laundry. He always ended the day saying or texting  “I love you”. The summer before his death, we had secretly recorded Brian playing Pearl Jam’s “Just Breathe” on the guitar – it has become our motto for moving forward.

We are so grateful for the help we received from the SADS Foundation. They were here for us to guide us on our journey. They were our lifeline, helping us navigate next steps for evaluating Brian’s younger brother. They continue to support us through informative e-newsletters, educational family webinars, and the virtual family conference where we connect with world experts and other SADS families. We ask that in memory of Brian, you please take a moment to donate to the SADS Foundation.