“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.

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.

My son, Sonny Jude, went unresponsive (stopped breathing and his precious heart stopped beating) at six months old.  His babysitter saw this and performed CPR and resuscitated him.  It was then we learned that Sonny Jude has LQTS (Long QT Syndrome).  In October 2022, when he was 13 months old, I put him down for a nap and he didn’t wake up.

My baby boy, Sonny Jude was the most loving, sweet, bright soul I’ve ever known.  In his short life, he made such an impact on everyone who had the honor of knowing him.  His smile would light up a room, he only ever knew love and happiness.  He loved waving to everyone. He loved laughing, smiling, playing, being outside, swinging, playing in the splash pad, snuggling, climbing stairs, his dogs, Paw Patrol, Bluey, french fries, and most importantly being around the people he loved. Sonny Jude especially loved his big sister Lyla, they were the best of friends, he loved learning from her and playing with his big sister.  His first word was “Lyla” or as he said “Wy-wa.”

My favorite memory of Sonny Jude is actually the whole summer before he passed.  We spent nearly every day at his grandparent’s house, playing on the splash pad or in their little pool with his big sister, Lyla.  Splashing in the water, sitting on the swing with us, lounging on the lawn, plucking blades of grass and offering them to us or the dogs, and always waving ‘hi’ to everyone for every occasion.

I’m trying to transition my grief and devastation into something positive.  Sonny Jude was a happy boy, and I want to put some of that positive and loving energy back into my community to bring awareness to arrhythmias, and how important learning CPR is. 

Sonny was always up early and loved pancakes, so it seemed right for our first fundraiser to be a Pancake Breakfast on February 19, 2022.  We wanted to raise funds and awareness for the SADS Foundation, and put fliers out at Lyla’s school, dance studio, and the local YMCA.

February 19th I held my first fundraiser, the first I’ve ever done. The SADS Foundation is specific to what my little Sonny Jude had, and they’ve been so helpful in assisting me with fundraising.

CPR is so important.  A 16 year old babysitter that had taken CPR revived Sonny In March 2021.  It doesn’t matter how old you are when learning CPR, as every second counts when you can save a life.

My goal with the Sonny Jude Foundation is to educate the general public about heart arrhythmia syndromes, bring awareness to the importance of CPR and to bring joy to others through a variety of fundraisers, projects, volunteer work and also through random acts of kindness, specifically with our “Have a Sonny Day” project. I look forward to making our Pancake Breakfast Fundraiser annual, and look forward to continuing working with SADS.

In 1997, my wife and I had three kids. Our son Michael, who was eleven, had fainted twice. The first time, it was explained away by the E.R. and his pediatrician as a vasovagal episode from unusual activities. The second time, he got an EKG and was examined by a neurologist and cardiologist. Nobody ever mentioned Long QT, and he was given a clean bill of health.

In June of 1997, we went on a family vacation to Israel. My oldest son was turning 13, and it was his Bar Mitzvah. With a group from our synagogue, we toured the country. On the day of his Bar Mitzvah, we went into the desert. It had been a very long and hot day, and we had a swimming pool party that night. Michael and his sister were swimming – they were holding their breath and doing laps underwater – when Michael became unresponsive. My wife jumped in the pool, and we did CPR by the side of the pool for 40 minutes or so. There was no 911 available – we were in the middle of the desert – and there was no defibrillator, which we found out later was what we needed. 45 minutes later, an Israeli helicopter with a medical unit arrived. They tried to revive him but couldn’t. He passed away in our arms, with his brother and sister watching. It was very traumatic.

It never sat right with me that the cause of death listed on the death certificate was drowning. Michael was a healthy eleven-year-old – he was very athletic; he could run and play for hours. The only concern we had was that he’d fainted twice. About six months after he’d passed away, I was going through some paperwork and came across medical files from several years before when he’d had his EKG. I took it to the Cleveland Clinic, where they had a renowned EP department, and showed it to the head of the department – who’d known Michael, even coached him in soccer. He had tears in his eyes, and said that it was abnormal – it showed a very long QT interval. Michael had been misdiagnosed.

This was 1997, so there was no easy access to genetic testing. There was a well-known cardiologist in Rochester who went over our records and said that he, too, thought Michael had LQTS, and that it would be great to prove it. He recommended that we call Dr. Michael Vincent, who was wonderful – that’s how I found out about the SADS Foundation. It took almost a year to get our genetic results, but we did finally get a call confirming that Michael had LQTS, which was the likely cause of death, and that the rest of our family needed to be tested. Michael’s mother and my daughter both also have LQTS Type 1.

The two things that really helped me personally were Compassionate Friends – an organization that helps bereaved parents; I went to their meetings once a month – and the SADS Foundation. They helped put me in touch with a community, and gave me a way to help others through volunteering and donating. I love their annual meetings, their medical and research programs, and everybody there.

These conditions can be particularly hard because the first time a family finds out about them, is often because of an event – like a sudden death, in our case. These conditions are also hard for other members of the family. My daughter was only eight when her brother passed away. When we were told what she had – many years ago – we were told to stop any physical activity she was engaged in (she was a member of the soccer and volleyball teams at the time). We were petrified as parents, because they told us that a sudden startle could trigger an event. We had friends who wouldn’t let her sleep over any more – because what if something happened during the night? It changed her life forever.

I’ve talked to lots of families about grief – about embracing the grief and not running from it. The great physicians, like Dr. Ackerman, come as close to understanding it as anyone outside the experience can, but there’s nothing like talking to others who have gone through this experience themselves.

Grieving is a long process. Over time it gets better – it never goes away, it’s always there, but it eases over time. You can go on with life and find joy and happiness again.

In 1999, we got a phone call on a Friday from our son who lived on a college campus where his sister also went to school. We were on vacation. He said that his sister had passed away – he wanted to tell us before the police called us.

Nobody knew why she had passed away. She was working at the public safety dispatch the previous night (which was her job at school). In the morning the fire chief didn’t hear from her, and after they called her a few times and didn’t hear from her for over 30 minutes, they decided to check and see what was going on. They found her down, called 911, and started CPR. She was taken to the ER, where attempts to resuscitate her failed.  She was then transported to the coroner’s. Because she was in a college community, the police roped off the area – they didn’t know yet if her death involved drugs or foul play.

When my husband and I arrived at the coroner’s, we were not allowed to see her, and were told they would be doing an autopsy. They warned us that it could take two weeks to a few months to get the results. I remember the coroner saying that even though it was a coroner’s case, they sometimes didn’t find the cause of death. They said that sometimes they ended up writing down “cause unknown.”

A nurse from the ER who was not on duty when my daughter came in called us and said that she was so sorry for what happened. She didn’t think my daughter was mixed up in drugs or a bad situation – and she was healthy, a volunteer firefighter. The ER nurse said that in case the coroner didn’t find anything, she had some information she’d be happy to drop off for us. Her daughter had a condition called LQTS.

My sister was very close to my daughter. She introduced her to lots of girlie stuff, and they went on a lot of adventures together. She wanted to fly out to the service but couldn’t because she had young children. She was talking to my mom about the service, telling her which flowers to get, when suddenly she went quiet on the other end of the phone. She was calling from the bathroom because she didn’t want to wake her children, and her husband was in bed. He heard the phone drop on the floor in the bathroom, and went to see what was going on. He told my mom that my sister had collapsed, and he performed CPR and called 911. She was admitted to neurocritical care; they thought she’d had a seizure. After doing a cardiac workup, they discovered that she had LQTS, and she was given an ICD. She’d never had an episode in her life before that day.

We called the coroner and told him about the new diagnosis in our family. He’d never heard of LQTS, but said it could make sense for other young people he’d seen as well. Because my daughter was a volunteer firefighter, she’d had a physical less than a year prior to her death – and it included an EKG. After fighting HIPAA, we finally got that EKG sent to my sister’s EP in Michigan, who said my daughter had LQTS too.

The nurse who had offered to give us information about LQTS told us about a foundation in Utah called the SADS Foundation that specialized in supporting families. We contacted them and they were very helpful, and gave me the names of about a dozen families who had also lost young daughters to LQTS, and we connected and shared our experiences. It was amazing how similar our stories were.

Two or three years later, my son sent me an email about a research project from Mayo Clinic on LQTS, where they could do bloodwork and genetic testing. I participated in the study. When I got an EKG shortly after my daughter’s death, I was diagnosed with LQTS and placed on beta blockers, which were hard for me to tolerate. I got a cardiac consult with someone on my health insurance plan, who did a ton of tests and said that because I was in my 40s, I would be fine, and that this condition was new and therefore over-diagnosed. He took me off the medication and told me not to worry.

During the course of my testing for the study, I did a treadmill test, where I was again diagnosed with LQTS. They drew my blood and sent it to Mayo, and said it was possible that other family members were affected, and that sudden cardiac arrest does happen to older women. I got another consult, and this doctor said that with my family history, if I couldn’t tolerate beta blockers, I should at least get an ICD. He compared it to a seatbelt in a car – most of the time you don’t need it, but when you do, it saves your life.

A few years later we got a call from Mayo Clinic, saying that they had the result of the research, and that my blood showed my family did have LQTS Type 2. My sister, son, and grandson also ended up having it. My son had already been diagnosed shortly after his sister’s death and had an ICD.  He was told his son, however, did not have it after he had contradictory EKGs.  After the genetic testing revealed he did, he was seen by a pediatric electrophysiologist and placed on medication. He eventually, at age 9, had an ICD placed. My granddaughter, who had been on beta blockers since birth because she was diagnosed with LQTS by EKG when she was born, actually ended up not having it. That’s why genetic testing is so important – because the EKG is tricky to read.

Through the years I’ve kept in contact with the SADS Foundation. I’ve participated in research and been a part of SADS Safe Schools, especially in Modesto, and made sure that all our school districts and school nurses knew about it. They have been a great source of information over the years, which is why we are supporters of the SADS Foundation.

Can you tell me a little bit about your family’s SADS journey?

Our son was seven years old when he cardiac arrested. We went to go wake him up for school and we found him dead in bed, and we did CPR. He was in a coma, and had hypothermia therapy, and then recovered. He has what we now know is Long QT Syndrome Type 8. Since then, our objective has been to help families in need and continue to raise awareness. He’s been successful, he’s 20 years old now and doing well.

Why do you support the SADS Foundation, and why is it important to you?

When this happened to us, we didn’t have any support, or know anybody around us who had what our son had. It was very hard for us to identify with other families. We didn’t have any resources to help us with the ongoing medical questions, or to know whether our other son was affected. It took three years to get genetic testing to find out what was actually happening to our son.

I looked online and started researching, and I found the SADS Foundation. From there, we started going over education and talking to others who had similar incidents. We found that connection, and knew we wanted to support others who may be going through what we did –
and be able to help them find resources so they could feel comfortable and have others to connect to.

We started a support group, where we assisted families who were going through the same thing. From there, we morphed it into helping them with getting CPR trained and certified. We started an AED loaner program – we loan them out to families who are waiting for their own.

We also decided we wanted all of our school districts to be heart-safe schools, so we trained 6,000 kids in CPR, and now we consult with other school districts on how they can get all their students trained.

What advice or tips would you give to someone running a Facebook Fundraiser?

It’s important to put your personal story out, and what the money’s being used for. Every post, I put something like, “Your $15 donation just went to assist a family member with getting the resources to access genetic testing,” or “Your money just gave a family the resources to find a second opinion – like Dr. Ackerman, who saved our family.” I show what SADS does for people – it’s not just education and a website. They bring families together, they connect families, they have research that they’re conducting and doctors who will see you – and that means a lot to those who are donating.

Keep on top of it, and keep letting everybody know why it’s important and how SADS has helped benefit you. Tell them what their money’s used for, so they know how it’s helping families.

Timothy Syndrome is a rare form of Long QT Syndrome that comes with several possible complications: webbed hands and feet, developmental delays, structural problems with the heart, dental problems, gastrointestinal issues, and a weakened immune system, among others. There’s no definitive count of how many people have the condition, but the estimate is somewhere between 30 and 50 people worldwide. Because Timothy Syndrome is so rare, research is sorely lacking.

Mary Ann’s son, Lee, had this condition. He was diagnosed when he was 1 year old. When he was 5, he passed away after hypoglycemic seizures—a complication he faced as a result of Timothy Syndrome. Just a month before he died, Lee dressed as Superman for Halloween, and so did the rest of the family. He earned the nickname “SuperLee,” and it stuck. He left a Super legacy behind.

The milk-and-cookies fundraiser is one part of that legacy. The family held the first fundraiser in 2011, the year Lee was diagnosed. After several long, difficult months, they wanted to throw a party to thank everyone for their support and raise awareness about Timothy Syndrome. They also wanted to raise some money for the SADS Foundation, specifically for Timothy Syndrome support and research.

The party was simple. It was an open house, so people could come and go as they pleased. Guests munched on cookies and milk, and the Ciciarellis gave out information on Timothy Syndrome. No one was required to donation, but everyone was encouraged to. The amount didn’t matter—every dollar mattered. By the end of the party, thanks to their roughly 100 guests, the Ciciarellis had raised about $15,000. Mary Ann worked with the SADS Foundation to set up a special fund for Timothy Syndrome.

That party has since become a tradition. Old friends of Lee’s still stop by with their parents, and Mary Ann is grateful to them for helping keep Lee’s memory alive.

Since the event is held around the holidays, the Ciciarellis give their guests a special Christmas ornament to remember the event and the cause.

The community has stepped up to offer support. Friends have helped by donating cookies and milk, and local bakeries also help out with donations. For the most recent party, a company donated a bounce house, and a local singer/songwriter gave a few hours of performance time.

Mary Ann also became part of a larger effort. In August 2015, just a few months before Lee’s death, she was one of three women who founded the Timothy Syndrome Alliance, or TSA. Another founder, Courtney Waller, has a daughter with Timothy Syndrome. Courtney’s daughter was featured in a CBS story about children with rare diseases.

The other founder is Katherine Timothy of the SADS Foundation—the person Timothy Syndrome is named after. She spent a lot of time following the kids who turned out to have this condition.

But there are still a lot of unknowns about Timothy Syndrome. That’s where the TSA comes in—one of its goals is to be a source for funding research. The alliance hopes to partner with a major medical facility in the near future.

One key aspect of Timothy Syndrome that needs to be researched is the life expectancy of people who have it. Many people with the condition die during childhood, but there is a 27-year-old woman still living with it.

The alliance also exists to be a resource for families. The TSA has connected with Timothy Syndrome families in different parts of the world, including Norway, New Zealand, and Hong Kong. And some of the money raised for the TSA goes toward scholarships for families to attend the SADS Conference, where they can connect with other families in person.

As for Mary Ann, supporting Timothy Syndrome families and searching for answers has become her life’s work. “I can’t help Lee anymore,” she said. “But I can help other kids like Lee.”

What you can do

If you would like to make a donation to the Timothy Syndrome Alliance, click here. 

If you are interested in holding a fundraiser for Timothy Syndrome, contact Mary Ann at tsaciciarelli@gmail.com.

You can also follow the Timothy Syndrome Alliance on Twitter.

On the morning of June 7^th, 2014, our just turned 2-year-old daughter suffered a sudden cardiac arrest in our home. This came as a complete shock to us, as it occurred with no warning whatsoever. Once stabilized in the ambulance in our driveway, she was transported to the local hospital. There are many sights and sounds from the emergency room that I’ve buried a bit too deeply to express, but one thing that stands out in my memory is the sound of my own bewildered voice asking – over and over again – “How did my 2 year old have a heart attack? I don’t understand.” Patiently and gently they tried to explain to me that she did not. She had experienced cardiac arrest.

Like so many people, I had no idea there was a difference between a heart attack and sudden cardiac arrest. Like so many, I didn’t understand many things about the importance of heart safety and awareness.  It’s not that I didn’t care about those things, but the significance had never before touched my life.

After our daughter’s cardiac arrest, it took 2 weeks for her to be stable enough to implant an ICD. We spent those weeks with her in the Cardiac ICU at Children’s Hospital. Though there was the stress of the constant ups and downs and monitors beeping and hospital life, there was still the feeling of safety that being in a hospital provides. Of course, we wanted to be home, but in the hospital, we knew emergency care was surrounding her.

After 3 weeks, we were home with our daughter. Though she was stable on medication and recovering well from her ICD surgery, the reality of her diagnosis and all she had been through started to sink in. The paradox of the beeping monitors in the ICU is that they elevated my stress, yet provided a constant assurance that she was being watched with literally every heartbeat. At home, silence was peaceful, but also nerve-wracking. Was she going to be ok? Would her ICD fire? What should we do about this, that, and the other?

Google became my best friend, and my worst nightmare. As I craved to learn all I could possibly learn to understand our daughter’s diagnosis, I poured over article after article, online medical journals, research papers, statistics and everything I could possibly find online.  Instead of encouraging me, quite honestly, it terrified me and I began to become overwhelmed with anxiety over all of the unknown possibilities. I knew no one else with this condition called Long QT other than the nameless participants of case studies I had read online.

While searching for information, I came upon the SADS website. I was particularly intrigued by the “Stories: Living and Thriving” tab on the front page, which features stories of those thriving with the condition. In a quest to turn my anxiety around, I resolved to read only those stories and nothing else. For days I poured over these positive stories offering hope and encouragement… reading some of them over and over again. I began to see our daughter’s diagnosis in a new light. For the first time, I realized that we were not alone in her diagnosis, but that there are thousands of families, just like ours, living and thriving with Long QT. Through the SADS site, I was able to make my first connections with families living with Long QT and those relationships have provided a wonderful community of encouragement and support for our family.

Though all of the medical journals I had read online had provided me with a plethora of scientific information, the SADS website brought everything into clear, concise perspective. Not only did the SADS website help give us hope for our daughters diagnosis, we also learned more about heart safety in general and new research efforts. The organization provides practical advice, support and referrals for all families affected by sudden arrhythmia death conditions. As a result, the SADS organization equips people to become an advocate not only for themself or loved ones, but also for those who are yet to be diagnosed. We do this by spreading awareness in many different ways. Perhaps we ask were the nearest AED is every time we enter a gym, sporting facility or school. We educate by clarifying and raising awareness between the difference from a heart attack and sudden cardiac arrest every time a media outlet posts an inaccurate headline. And we advocate by sharing and posting pertinent information not only on our social media sites, but also in real life dialogue with others. We educate; we advocate; and in doing so we increase the chance that more lives will be saved by the awareness we’ve raised.

Thank you SADS for being an important anchor of support for all of us affected by SADS conditions.

Donate to the 2017 No Ball At All Campaign http://www.sads.org/Donate-NoBall-2017.aspx#.WX-m34grLIU

This is Abrielle Watschke.

In 2014, she survived an out of hospital sudden cardiac arrest.
Today, she is thriving with Long QT Syndrome.

Read the Watschke family’s story here.

Donate to the 2017 No Ball at All Campaign in honor of this amazing girl here.