Jill Collinson

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

We had no family history – this came out of the blue. Jake started having events at 7. The first one he had was when he was dropped off at a skating rink for a birthday party, and we got a phone call that he’d had a head injury. They did scans and cleared him at the hospital. He then had two events shortly after – one riding his bike, and one running up the stairs after recess during Bible School. That’s when they did more extensive medical testing, and gave him a diagnosis of seizure disorder.

He had several events over the years – in the swimming pool, on the soccer field, while running laps in PE, while playing games at a church event – and I spent all those years studying seizures, going to symposiums, and educating myself. It bothered me that there were aspects that didn’t quite fit the definition of seizure disorder, like how long the episodes were, or that they always happened after physical activity. We talked with his neurologist, who said it was a coincidence – but I thought it was a pattern.

Our breakthrough happened when Jake was 20 years old, working at a theater, and had a “seizure” in the lobby. An off-duty police officer – Richard Salgado from the Hillsborough County Sheriff’s Office in Tampa – found him lying face down and began CPR. The fact that a stranger found him made all the difference – we would have thought it was a seizure, but the officer through it was his heart. He was taken to St. Joseph’s Hospital in Tampa and intubated, and we were told he’d been found in Sudden Cardiac Arrest.

They asked if we could implant an ICD in him, and as we read through the paperwork we saw he wouldn’t be able to have MRIs, and because we thought he had seizure disorder, we didn’t want that. The doctor on call said that if it happened again, and he didn’t have a device, he wouldn’t have a brain to worry about. We consented and the ICD was implanted.

He had an event soon after, and came to right away because the ICD fired. They did a download of the data and told us they suspected it was either LQTS or CPVT. Genetic testing eventually confirmed that it was CPVT. They put him on medications and checked the rest of the family. My husband and I don’t have it – he’s de novo.

His cardiologist, Dr. James Irwin of BayCare Medical Group, said it was his opinion that Jake never had a seizure – and we were shocked. We’d been in treatment for 14 years. I was upset – I asked how that could have happened. The cardiologist said he just wasn’t examined at the right moment. Now he leads a normal life and has learned to live with CPVT.

Jacob Collinson

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

I was diagnosed with epilepsy for a long time, which is clearly not what I had. Strobe lights didn’t affect me, and tests never really showed anything. It was a bit of a journey to diagnosis, and it took a while to find the right medications and everything. We originally thought it was LQTS and I was on different meds while we were waiting for our DNA results – it was rough. I would irritate paramedics when I was having events, because I wouldn’t want to go to the hospital – because my heartbeat would be stable and my arrhythmias would disappear.

Now I work in IT – general support, and I’m about to move into security. I don’t play sports like I’m used to. Some days aren’t as good as others, but overall, I’m doing fine.

Can you tell me a little bit about your CPR save?

It’s one of those things that happens in the career of a paramedic and that will stick with you for life. I’ve seen a lot and I’ve done a lot, but responding to Gregory’s house is something that has stuck not only with me, but with the entire team.

There is no one individual that saved a life that day. It really truly is a team effort. It started with Greg’s parents, who were scared to death of what was taking place and having a lifeless young body in their house. I was fortunate that day to work with my partner Nick, and volunteer ambulance corps, as well as our police department dispatchers. All of us were very experienced and well-versed in what needed to be done.

As soon as we walked into the house, it was very apparent that we were in a critical situation. A young boy was lifeless on the floor. We immediately started high-quality CPR, with ventilation and chest compressions. We looked at his cardiac status, used defibrillation as needed – as well as intubation and ventilation. We’re on the time clock as soon as someone goes into SCA. There’s only minutes before hypoxic brain injury occurs. He was down probably a good eight to ten minutes. So we knew we were on the cusp of working to bring someone back from the dead. We were able to bring his pulse back within 10 minutes, and got him to the hospital for the support he needed so he could live a full life.

Often, paramedics leave patients behind after saving them. But I had such an immediate connection to the family, so I stayed in touch with his mom and dad, and I’ve worked with Gregory as a mentor as he’s progressed to his medical career. I consider him almost like a little brother. We all feel very fortunate that we were able to be a part of something that worked out so tremendously well.

How has this event impacted your life afterward?

I’m a father of five kids. I think events like this make us more aware that we need to love our children, we need to cherish them. And we need to find moments in time that we hug and hold them, and not always chase the next dream, the next sporting event, the next whatever. It’s really important to learn to slow down and appreciate the little things in life.

I feel so fortunate to have gone to Greg’s wedding and watched him grow up, and that gives you validation as a paramedic and medical clinician – the skills that I have, that I can bring to bear on another person’s life, are really validated by watching this kid stand at the altar, get married, become a registered nurse and pursue his dreams.

What do you want others to know about Sudden Cardiac Arrest?

The unfortunate thing is that people often don’t find out about these conditions until somebody goes into cardiac arrest. So first and foremost, I feel like every new parent should learn how to do CPR. Because at the end of the day, if somebody goes into cardiac arrest – which we cannot control – at least we can respond properly.

Could you talk a little bit about your family’s SADS journey?

My story begins on June 11, 2001, when my mom had a Sudden Cardiac Arrest. And unfortunately, she passed away. When you’re six years old, and you lose a parent unexpectedly, there are so many unanswered questions– like, Why did she die? How did she die? It was scary to go to doctor’s appointments, and run on treadmills, and be hooked up to heart monitors. It’s very confusing when you’re that age, and all those tests just keep giving you no answers.

My sister and I were put on beta blockers, just as a precaution, and our doctors made sure that we weren’t doing anything that could put us in a jeopardizing position – which was tough, because we still didn’t know why we needed these medications when we had no answers and experienced no symptoms. I got a little older, and as a teenager, it’s hard to want to take medication for reasons you still don’t understand.

Fast forward to 2013 – I was 17 at the time. And from 2001 to 2013, we still had no clue what caused my mom’s death. My grandmother discovered the SADS Foundation and became connected in the community. Through SADS, she got in contact with Dr. Michael Ackerman from the Mayo Clinic, who took on my family’s genetic case and kept a very watchful eye. He became our protector, someone we could go to and ask questions. We felt safe knowing that we had someone we could reach out to.

In 2013, we had a reason to go visit him in person – because that’s when I had my cardiac arrest.

I was a senior in high school, and physically active. I was working out at the gym. On this particular Wednesday morning, I felt lethargic going into my weightlifting class, which was very unusual for me. I got to about my fourth or fifth repetition, and it was almost like someone had a little carafe with nine ounces of static that was shot into the vessels of my heart.

I collapsed and immediately went into cardiac arrest. I feel very grateful that the two instructors in that class reacted right away. They performed chest compressions for about 15 minutes until the paramedics arrived. After the paramedics got there, they rushed me to the hospital to intensive care. I was put on a ventilator, and it was not looking optimistic at all. This was the first time since 2001 that my family had a reason to panic again. They wanted to transfer me to a different hospital to start CT scans and see what sort of brain damage I had. When you experience out-of-hospital cardiac arrest, about 90% of people have some sort of serious brain damage. It was a miracle that the results we got back showed absolutely no signs of brain damage.

I remember waking up in the hospital, very unaware of where I was and why I was there. And I remember my dad sitting at the foot of the bed. He quietly told me what had happened, and the first thing I thought of was my mom and her younger brother (who had also passed away of cardiac arrest). This experience was a strange connection I had with them.

We were able to gather my mom’s DNA information from the coroner’s office. They tested my DNA, my sister’s DNA, and my grandmother’s DNA. We’d been through so many years of being told “no” for genetic heart conditions. It felt like we were at a dead end. Then, Dr. Ackerman tested for CPVT – and that was our smoking gun. My cardiac arrest ultimately became the answer for my family’s genetic journey.

Since then, I’ve had an ICD. It feels like my own little best friend – a security blanket watching over me.

What was the biggest obstacle to receiving proper treatment?

It can be really tough to feel like you’re at a significant roadblock. And to feel like you’re going to have to live with a question mark for the rest of your life. But it’s so important to channel your remaining hope, and use that hope to keep asking questions. Even when you feel like you’ve exhausted all the questions in your book, never stop asking questions.

What advice would you give to other families in a similar situation?

Don’t feel like you’re at the end of your story – you’re just at a certain chapter. There’s so much life left to live. Ask questions, use resources, go to SADS conferences and watch their videos, and stay connected with others who are in similar waters. Learn to lean on each other. Nobody is alone in this, even when you feel like you are. And don’t feel ashamed for asking questions – that’s been the biggest game-changer for my family.

How has the SADS Foundation helped your family on their journey?

It’s because of SADS and Dr. Ackerman that my family got answers. The cherry on top was being at a SADS conference in Ohio, where Dr. Ackerman was speaking, and he actually told my grandmother and I our genetic results, and it just felt surreal. I feel so grateful for everything that the SADS Foundation has done to get our questions answered. And to help my family be set up for success.

Name: Karly Gonthier 

Age: 13

Which SADS condition do you have? CPVT

When were you diagnosed? June, 2019

How are you treated? (Beta blocker, ICD, etc.) Beta Blocker, calcium channel blocker

Personal Questions

How/when were you diagnosed? The day after my 13th birthday, I collapsed during a dance dress rehearsal.  This was the 3rd time I had “passed out” like this.

What has been the biggest challenge you’ve faced in living with your diagnosis? Not being able to participate in summer activities and my favorite sports

What is one positive thing that has come out of your diagnosis? I got to travel to Minnesota to see Dr. Ackerman at the Mayo Clinic

What does your day-to-day life look like? In cardio activities always checking my heartrate, and always taking medicine day and night

What are your favorite hobbies and activities? Baking, and cooking, taking walks, spending time with friends

How has the SADS Foundation been helpful to you? I have been able to see others with my condition, older and younger.

Name:  Cian Bennett

Age:  13

Diagnosis:  Catecholaminergic Polymorphic Ventricular Tachycardia (CPVT)

Age of Diagnosis: 13

What led to your diagnosis? 

I had a fainting episode at home and my pediatrician sent me to a cardiologist.  My first visit was okay and they thought it was just vasovagal syncope.  My cardiologist wanted me to follow-up the next year and at the follow-up he decided he wanted to send me home with a holter monitor because he saw a slight change on my EKG that was still considered normal but was different than the prior year.  My holter monitor results showed PVC’s and arrhythmias so he scheduled me for a stress test.  The stress test was very abnormal and showed polymorphic ventricular tachycardia during exercise.  I was then sent to a cardiac electrophysiologist.

Where you involved in any sports or activities that had to be modified or stopped completely when you were diagnosed?

Prior to my diagnosis I was very active.  I love sports. I attended basketball camps, played little league baseball, and played basketball with Upward Sports for many years. When I was diagnosed, I was in 7^th grade athletics at my middle school and was one of the managers for our basketball team.  

After my diagnosis my doctor restricted my physical activity and I am no longer allowed to participate in competitive sports.  I can only do light physical activity with supervision.   I would love to still be able to participate fully in my athletic class at school and try out for sports at school such as basketball.  My doctor says I can still manage sports at school but not play or compete.

What are some of the things that helped you adjust?  What did you do that helped?  Did you develop new interests, if so what were they?

I always loved to play on the X-box and PS4 before my diagnosis but now that I cannot be very physically active, I play on these so much more.  I love Fortnite, Road to the Show 20 and NBA2K.

What were some of the hardest things about being diagnosed?

The hardest thing about my diagnosis is not being able workout and play sports.

What are some of the good things that have happened to you because of your diagnosis and what are some of the things you have learned?

Because of my diagnosis, I met a new friend through the SADS Teen Chat Zoom that I now play Fortnite with on my PS4.  It is nice to be able to talk to someone who has a similar diagnosis as me. 

What was the best thing your friends did to support you?

My friends understand that there are some things I just can’t do anymore but there are other ways I can still be involved in athletics and sports. My coaches at school allowed me to stay in athletics class even though I was very restricted. It made me happy that I could still participate and stay in athletics with my friends.

Medication:

I don’t mind taking my medication because I know it is helping me.  I haven’t really had any issues taking it.  I take Nadolol and Flecainide.

If you could give encouragement to newly diagnosed children or teens what would you tell them?

I would tell anyone diagnosed with my condition that even though I am limited with physical activity and sports, there are other things I can still do.  I am also glad there is medication that can help.  My mom tells me that I just have to think a little differently about things now. I may not be able to do all I could before but I can still do other things I enjoy and I try to focus on that.

Quality of Life:

Physical:  7

Mental:  10

Overall:  10

My daughter has CPVT.

My daughter, Lily, suffered sudden cardiac arrest while swimming in our pool on July 8, 2012. She went without oxygen for an estimated 11 minutes. Lily continues her recovery from the resulting anoxic brain injury.  She is now 16 years old.

Here is her story.

On July 8, 2012, many lives were forever changed. It was a typical summer Sunday. My girls were recently out of school (Lily finished 3rd grade and little sister Charlotte finished 1st grade) and summer was just getting started. Golf camps, surf camps, Vacation Bible School and an annual camping trip to Big Sur were approaching. Not to mention relaxing days at the beach and in our backyard pool with family and friends. Life was good.

My sister and her family came over for a belated birthday celebration for my brother-in-law. It was to be a day of splashing in the pool and grilling pizzas on the barbecue. It started off like any typical pool gathering. Lily and her older cousin were perfecting their jack-knife technique while jumping off the top of the pool waterfall. (Something she has done a thousand times). All eight of us were in and around the pool at the time of Lily’s last jump.  Auntie had her underwater case on her iPhone and caught everything on video, including the event.

Lily was showing us her spectacular jack knife dives, she’s lands on her back with arms holding on to her right knee, feet above the water. Lily was especially wired that day, with tremendous enthusiasm, taking her dives very seriously.

The next jump she landed on her back again, you can here my sister (on the video) asking if she’s OK, it looked like it would have hurt. Her head popped up out of the water and she smiled and said she was OK as she swam towards the edge of the pool.  Just a few strokes short of the edge, she froze and as she fell backward sinking into the pool. Something was wrong. We asked her cousin standing above her at the edge was she OK? He shrugged. Within seconds Jim flew in and pulled her out of the pool. I ran to them and after what I saw and the sounds coming from Lil. My first thought was that she was having a seizure.  I remember my brother-in-law yelling “CALL 9-1-1!, CALL 9-1-1!”

Lily’s uncle performed CPR but intermittently had to stop at the 9-1-1 operators request because she appeared to be intermittently breathing but she was motionless as her face began to turn blue. She seemed to take some breaths but we could barely find a pulse. Time stood still. It just didn’t seem real, it was all happening so fast.

By the time the paramedics arrived, several minutes had passed.  We knew the paramedics; Lily would always get her gold fireman stickers from the same guys as they shopped the local grocery store. Here they were now saving her life. After what appeared to be violent CPR, and double defibrillation shocks, Lily had a weakened pulse of 32.

Lily was rushed to the local hospital. There doctors frantically worked to keep her stable and get a CT scan. While Lily went for her CT scan Jim and I poked our heads in the waiting room to acknowledge Jim’s parents—that’s when we heard those two words I’ll never forget, “Code Blue, CAT Scan.” Lily had gone into cardiac arrest for the second time.  A security guard found us and escorted us to be with her. I called out her name, asking her not to leave us.  Seconds later, her heart rhythm was restored.  Quick scan revealed she did not suffer any blunt force trauma that we may not have witnessed when she entered the water. She was immediately taken up the road to the local children’s hospital where she would be in the best hands for acute critical care. The plan, pray she makes it through the night and stable enough for one more transport further up the road to the major children’s hospital, at the crack of dawn to avoid commuter traffic. She made the trip and was admitted to PICU where she remained in that room for an entire month.

After several heart studies, ICD surgery, MRI’s, countless EKGs and X-rays Lily moved to less critical care. But she returned to PICU for another 2 weeks after she experienced another cardiac arrest. We also learned the cause of her injury, she was diagnosed with CPVT. But after myself, my husband and other daughter we learned it was not hereditary but most likely a genetic mutation.

Now we were on borrowed time to find Lily’s next home away from home (the hospital and insurance was pushing us out to take Lily home). She moved to another children’s hospital where she was accepted into the rehab program. We remained there for 11 weeks. Unfortunately, Lily spent several of those weeks in and out of the PICU for a variety of issues. This time we knew we were not going to win the fight so we decided to make arrangements to bring her home. Lily had lost all mobility, major and fine motor skills, swallowing, eating, vision tracking — the doctors had no hope of her recovering. But when we looked into her eyes we knew she was there and we weren’t ever going to give up on her.

Since Lily’s been home she has continued to improve and progress. Her vision returned with normal tracking, she regained head control and trunk control, swallowing allowing her to enjoy pureed foods, movement of her limbs and enough on her right side to give you a slow high-five. She continues to amaze us all with her spirit and her physical progress. I can only speak for myself but life has changed in so many ways.  I’ve lost and gained. I’ve learned so much. I learned about the human body from doctors, nurses, therapists and specialists yet I’ve learned so much about human nature from strangers, family and friends. I’ve learned that it’s hard for some to deal with life altering events and extreme sadness. I understand but sometimes I also wonder why when we are the ones in the trenches. But I’m learning and I’m trying to be more understanding. How I see life with a new perspective. Not just experiencing such heartbreak but seeing the world from her eyes. Many people (especially children) don’t know how to talk to her because she’s in a wheelchair or think that she’s not mentally there because she isn’t talking back. I’ve had to learn the “system” and fight for services and education. How isolating our world has become and every day I search for something to break the monotony. How I feel solely responsible for her happiness. How hard Lily works and how she desperately strives to get better by doing hours and hours of therapy. How I’ve had become two different mothers; one for Lily and one for Charlotte. How it has challenged my husband and I. How sometimes I feel I can’t relate to anyone and the outside world most of the time. How lucky and thankful I am to be Lily’s Mom but at the same time this means that I hurt deeper than anyone.

But like my aunt always told me the pendulum swings both ways. There are those who have brought so much love and support to our family that I cannot find the words to express my gratitude. The posts and notes and prayers from all over the globe mean everything. We are so blessed with unbelievable family, friends, classmates and fellow parishioners who have been there for us through the years.  Lily has shown and taught me so much. She is my inspiration. She has been knocked down time and time again but she keeps getting back up and fights on. She has endured countless complications from being immobile. She has had a full spinal fusion, hip dislocation and hip surgeries, relentless spasticity issues, etc. But she’s shown me the goodness in people. I’m learning to let go and stop trying to control outcomes.. The practice of patience, everything happens in time. To live in the present; not the past or future. All we have is today, here and now. And I’m forever grateful that at this moment Lily is sitting next to me, laughing, smiling, and breathing.

Lily’s CPVT is managed with an implanted defibrillator and is on a couple different heart medications and  I’m happy to say she hasn’t had a heart event in nearly 7 years. She now attends a special ed program in a local high school, she’s able to attend 4 hours a day, 4 days a week. Before starting this last year all her instruction was at home. She uses an eye-tracking computer for communication. Lily has a very full life. We take her to the mountains for adaptive skiing, lots of beach time and walks along the beach, movies, boating and fishing, and just being outdoors. Lily is our miracle.

Lily’s journey can be found here: https://www.lilyneedham.com/

Name: Karin Blåder, from Sweden

Age: 33

Which SADS condition do you have? CPVT

How are you treated? (Beta blocker, ICD, etc.) Beta blocker (Inderal) and “Tambocor”

How/when were you diagnosed?

I was diagnosed in the summer of 2019. I passed out at the gym while I was exercising. I hit my head from the fall and received CPR by employees of the gym, rushed to the hospital by an ambulance. A couple of months later I received my CPVT diagnosis.

What has been the biggest challenge you’ve faced in living with your diagnosis?

In the beginning I was always worried that it would happen again, so I was afraid to do anything that would increase my heart rate. Going out for a walk for example or even taking the stairs. At this point, I’m trusting my medication more and trying to not think about it too much.

What does your day-to-day life look like?

I work as a nurse and I also run my own company aside doing esthetic injections, like botox and fillers. I’m going to the gym as often as I can and take care of my three kids. I take my heart medicine three times a day.

What are your favorite hobbies and activities?

I love going to the gym! I keep an eye on my heart rate with my smart watch.

How has the SADS Foundation been helpful to you?

I felt so alone with this condition before I found SADS on Facebook. There I could read about others with the same condition.

Age: 38

Which SADS condition do you have? CPVT

When were you diagnosed? Oct 2017, after 20 + yrs of misdiagnosis 

How are you treated? (Beta blocker, ICD, etc.) ICD placed in November 2017, nadolol and flecanide 

How/when were you diagnosed?

I had a severe SCA that my husband thought I wouldn’t come out of. Dr decided to try another ablation. He injected me with adrenaline before putting me to sleep and the monitors lit up like Christmas. He sent me to a cardiac EP specialist who confirmed diagnosis and said I had not been fainting but going into cardiac arrest. I had an ICD placed that week and additional medications were added. Genetic testing was also ordered then.

What has been the biggest challenge you’ve faced in living with your diagnosis?

Accepting that my best is enough, getting over the guilt of passing it on to my child, and learning to live a more stress-free life.

What is one positive thing that has come out of your diagnosis?

I’ve learned more than I ever thought possible and have educated others about my condition. My genetic mutation was added to the registrar after my daughter and I were added to the list.

What encouragement or advice would you give someone who has just been diagnosed with your condition?

You can live, you just have to accept that you can’t do everything you once did.

What does your day-to-day life look like?

I work at an office a couple days a week. On my off days, I do a lot of rest and recovery. 

What are your favorite hobbies and activities?

Reading, watching movies and going to the beach

Name: Bella Alvarez
Age: 11
Which SADS condition do you have? CPVT
When were you diagnosed? December 2018
How are you treated? Beta Blocker (Metoprolol)

How/when were you diagnosed?

I was diagnosed through genetic testing after my Father was diagnosed with CPVT and I lost my Aunt and Uncle at 15 and 16 years of age due to the undiagnosed CPVT.

What has been the biggest challenge you’ve faced in living with your diagnosis?

The biggest challenge was taking medication and getting used to my Mom never leaving a cheer practice.

What is one positive thing that has come out of your diagnosis?

I am able to share my experience with others and teach others about the benefits of learning CPR/AED

What encouragement or advice would you give someone who has just been diagnosed with your condition?

Don’t be scared, at first you will feel bad but then you will learn to be ok.

What does your day-to-day life look like?

I started middle school this year and go to cheer practice three times a week for three hours each day, take my heart medicine every night at 9

What are your favorite hobbies and activities?

I love to dance with my friends and I love to fly in cheer

How has the SADS Foundation been helpful to you?

SADS foundation made me feel better about being different and reminds me I am not alone there are others just like me!

When I was 22, I started training for my first triathlon. A few years later, I had completed over 20 short triathlons and was a few months away from the big day when I would marry my husband, Ockie. I had even competed for Team USA in amateur world triathlon championships.

But then things changed. It was a normal evening at the YMCA, and I had somehow convinced my sister to come swim laps with me (she hates swimming). Two laps into our swim, she passed out in the pool. As the lifeguard and I pulled her out of the pool, she regained consciousness and gasped for air with no recollection of what happened. Others that witnessed what happened thought she may have had a seizure. Many appointments later, a local cardiologist suspected that she may have CPVT and referred her for genetic testing. 

A month or so later, four of the six members of my immediate family had been diagnosed with CPVT – my dad, two sisters, and myself. I have another sister, a fraternal twin, who does not have it. We were all so physically active growing up and could not understand how this condition had only manifested now. 

On top of this, my CPVT diagnosis was especially challenging for me. I also struggle with advanced stage 4 endometriosis and have had three surgeries since the age of 19 to alleviate the painful lesions and associated symptoms. I initially began exercising so regularly as part of my treatment plan, which helped my symptoms. After my CPVT diagnosis, I felt as though I would never feel like my happy, healthy self again. 

But then our local cardiologist referred us to Dr. Michael Ackerman at the Mayo Clinic in Rochester, MN. He and his team have given us all so much hope and the confidence to continue doing what we love despite what seems like a diagnosis of limitations. 

With encouragement and support from my sweet husband, I was able to continue racing in a few triathlons with him as my designated swimmer (since swimming is known to trigger CPVT events). We’ve also become avid golfers and enjoy low key days on the course as a new form of exercise. Our family has become closer since all of our diagnoses, and we rely on our faith to carry us through the difficult times.

Today, I take nadolol once daily and flecainide twice daily. I also underwent LCSD (left cardiac sympathetic denervation) at the incredible Mayo Clinic Rochester and visit there annually. I am still able to run or bike almost every day, but carefully monitor my heart rate. I now satisfy my competitive nature by submitting homebrew beers to competitions and by attempting (and usually failing) to beat my husband at golf. CPVT might alter your path, but it can never change who you are. I want to encourage other SADS patients to find their outlet, be themselves, and do what you love. Make friends with your condition instead of seeing it as the enemy within you.

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