What Would You Miss Most?

Parent Heart Watch

Published on Feb 10, 2017 by Parent Heart Watch

Sudden cardiac arrest in youth is not rare. It’s the #1 killer of student athletes and contributes to the #2 medical cause of death under 25, and is the leading cause of death on school campuses. The vision of Parent Heart Watch is to eliminate preventable deaths and disabilities from SCA in youth by 2030. These Parent Heart Watch parents share their personal story of loss to help parents understand the critical need to protect young hearts.


Happy 26th Birthday Rylie

Ryan’s Birthday number 26. Is this number of significance? Today it holds a lot of meaning since specific numbers have been intensely in my mind ever since Ryan left us. I am not sure why. I guess it is the permanence of his departure coupled with trying to hold on to any signs he sends me. These signs always happen to include numbers.  I see them on license plates, billboards, hotel rooms, buildings, stores, clothes, student lockers, in clouds, magazines, even trucks passing by…you name it…special numbers just appear.  I also am reminded of the present date, or a date a special event occurs or even the time I look at the clock. This repeatedly has been 4:26 either a.m. or p.m. since 4/26/09…Ryan’s Angel Birthday. Seeing these numbers makes me smile as I feel Ryan’s presence all around me.

So on Ryan’s 26th birthday, I reflect on the number 26 as being one of my significant numbers. Other special numbers include my lucky number 4, his lucky number 7, number 18 which is not only the age he left us but his birthday (7/18), and finally the number 19. This number was said to be Ryan’s number by Teresa Caputo, the Long Island Medium. Ryan came through her at Constitution Hall to talk with my daughter, Erin. We later learned that this was the number on all of his sports stickers throughout his childhood room.

Happy 26th Birthday to my special angel…seems like yesterday we were celebrating your graduation from Robinson and future as a HOKIE! I will never stop missing you. Please keep sending your beautiful signs. It keeps me smiling.

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Maria Camporeale Newell
Maria Camporeale Newell Thinking of you and offering a special prayer

Ellen Speros
Ellen Speros So beautifully said! Hokies everywhere are sending you continued strength and love!

Marylynne Jankowski Burns
Susan Wooten
Susan Wooten Thinking about you all. 💜 Happy Birthday, Ryan.

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Colleen O'Donnell Kivinski
Lisa Horowitz Margulis
Lisa Horowitz Margulis I love you Jeremy Lopynski! Send you all big hugs! Happy Birthday Ryan.❤️

Yvonne Jevtich Batal
Yvonne Jevtich Batal Still have my Dragon fly displayed <3

Beth Hanlon
Beth Hanlon I remember your kids just as they are in that photo. Blessings to you.❤️🙏

Kathy Jasien
Kathy Jasien ❤️❤️❤️

Kim McGettigan Lynch
Kim McGettigan Lynch I have no words, but I am 100% confident that you have one gorgeous guardian angel looking over you and the amazing work you are doing. <3

Judi Freedman Steinberg Ottosen
Dana Siekman
Dana Siekman Beautiful family, beautiful Angel, beautiful Mom!!

Constance D. Guercin
Constance D. Guercin Awesome pic!! HBD Riley!! Enjoy crabs tonight!! ❤️❤️❤️❤️❤️❤️

Peggy McNamara
Peggy McNamara Heart going out to u Jeremy! Beautiful family!!!!

Sharon Ricciardi
Sharon Ricciardi Happy Birthday to a perfect Angel. Love & Hugs.

Brigid Lane
Brigid Lane Thinking of you and your family today- sending 💛💛💛💛💛 from Midlothian.

Terry Coyner
Terry Coyner What a beautiful picture of your precious babies! I’m so happy I got to see some of Ryan’s signs with you ❤️ I love you and your infectious smile my friend 😍

Valasie August
Barbara Flaherty Strittmatter
Hector Paredes
Hector Paredes Thinking of you and your family, Jeremy and wishing you peace.

Mimi Fotopoulos
Mimi Fotopoulos Great picture!!! Happy Birthday to Ryan!!! My thoughts are with you and all the Lopynski’s today!!! Sending love and hugs!!!

Angie Speros Scarfone
Angie Speros Scarfone Beautiful pic… You and your family have done such amazing work in Ryan’s name and given you the strength to do what you do….an inspiration to all of us❤️ Sending love and prayers 😘❤️🙏🏻 xo

Eileen Stevens Spencer
Eileen Stevens Spencer Hugs to you today Jeremy

Kathi Binkley
Kathi Binkley This is a beautiful family !

Rosemarie Kane Dorsty
Liz Buchwald Shaw
Kirsten Wiley
Kirsten Wiley Sending you hugs! 💜

Sherri McMenamin
Sherri McMenamin 😇👼🏻 Ryan walks with you and Johhny everyday and showers us all with his blessings as we do the work he guides us to do. ❤️❤️

Melanie FitzGerald Celenza
Melanie FitzGerald Celenza Sending you all hugs today and always! Happy Birthday to your special angel

Gina Crocenzi Masterson
Mary Costley Bathke
Mary Costley Bathke Happy 26th Birthday dear Riley Roo💋
Not a day goes by without a thought of you.
Love you Jea❤️

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Jeff Frey
Jeff Frey Beautiful picture

Deborah Schmidt LaBriola
Annette Tuchman
Laura Friend
Laura Friend Happy Birthday in heaven Ryan. Hugs and love to you Jeremy and family. You’re in our thoughts and prayers. Please feel free to reach out to me if there’s anything I can do to help you. <3

Margaret Mulderry
Margaret Mulderry Beautiful, happy family…sniffle..hugs to you J

Tricia Vogel
Tricia Vogel Such a beautiful family and memories…the birth of your first born is a memory that never fades❤️

Loretta Madelmayer
Loretta Madelmayer Happy Birthday Sweet Ryan! You’ve got a pretty special family. 💙😇

Millie Gleason
Millie Gleason Thinking of you my dear friend.

Shelly Young
Shelly Young So much love sweet Jeremy. Your faith and your connection is so beautiful.

Nia Bagley
Nia Bagley Your connection to him continues to be incredibly beautiful.

Karen Pederson Dillinger
Teresa Shaw
Teresa Shaw What a good looking crew! Love you.

Renate Manville

Screenings for USA football and beyond…

dr-jonathan-a-drezner-md-56449b3e2eb65Dr. Jonathan Drezner is a sports medicine specialist in Seattle, WA. He is trained to treat injuries sustained during physical activity. He is the medical director on the board of The Nick of Time Foundation in Seattle, whose mission parallels the Ryan Lopynski Big heart foundation to prevent Sudden Cardiac Arrest.  His words advocating the extreme importance of heart screenings in our young athletes, ring clear and true in out hearts!

Scan 99

A poem for you to heal my heart… Happy Angel Birthday 7 my sweet Rye

ryan and me

7 years ago, my heart still broken

finding comfort in faith and words unspoken

On April 26, 2009 you never fully left me Rye

Our souls connected on that day I had to say goodbye


As hard as it’s been to make sense of it all

You’ve held my hand lifting me up as I fall

You always whisper beautiful words in my ears

Then I smile and look to the heaven with tears


Your words encourage me to understand

That you left me at 18 as part of a plan

We hold onto memories we share from our heart

But the greatest gift you gave me sets us apart


It’s the gift of PURPOSE that has given me hope

A reason to embrace life and teach me to cope

Our foundation provided me strength and renewed passion in me

A new lens into our world with possibilities I can now see


To find PURPOSE is far bigger than ourselves I now know

It is part of life’s journey helping our family to grow

I am grateful to unravel my greatest gift ever

As I continue to honor you with this critical endeavor


With heavy heart and endless love on this angel year 7

Keep holding my hand Riley Roo…until we meet again in heaven.




Miracle At The Bonfire

Ryan’s Dad has a twin brother, Jimmy.  For as long as Johnny and I have been married, the twins have always celebrated their birthdays together. Their 60th birthday was no exception.  I did not plan anything lavish as I did for their 50th when I surprised them with a golf trip to St. Andrew’s in Scotland.  No…after all, turning 60 is usually downplayed as no one cares to admit their ripe old age.  Of course when we stop to reflect, we realize each year is a gift.

This year, I decided to host a family celebration at the beach.  So the twins and cousins packed their bags, I gathered logs for a bonfire, and off we went to our respective condo’s in Ocean City, Md.  It was dinner hour when we arrived, so our first stop was the legendary GROTTO’S where our celebration began.  It was December at the beach so needless to say we had the whole cozy beach bar to ourselves complete with that good Italian smell, music, balloons, pitchers of beer, and more than enough pizzas and subs.  Sixty years old…what?  They were clearly feeling 16 again!

Johnny and Dillon slipped away to build a roaring bonfire on the beach in 26-degree weather.  With the gang sufficiently full, we all headed to the beach to continue our celebration.  As we huddled together around the roaring fire, bundled in blankets and singing all generations of music, Erin noticed what appeared to be a carving in one of the logs. We all looked, we all saw, and then the goose bumps set in!  As we stared into the flames with utter amazement, we read the letters of Ryan’s initials, R.L.

In an instant, subtly and so well timed, Riley had sent us a sign from heaven. Never missing a party, always holding us close, and wanting us to know he has not truly left us.  Our little angel had shown us another miracle. As I choked back my familiar tears, I smiled, looked up at the twinkling stars and whispered, “Thank you for coming Rye”.

Is there a difference between Cardiac Arrest and a Heart Attack?

There are many people who believe that sudden cardiac arrest and a heart attack are the same thing. Here is some great information from the American Heart Association that distinguishes the two:

July post

People often use these terms interchangeably, but they are not synonyms. A heart attack is when blood flow to the heart is blocked, and sudden cardiac arrest is when the heart malfunctions and suddenly stops beating unexpectedly. A heart attack is a “circulation” problem and sudden cardiac arrest is an “electrical” problem.

What is a heart attack?

A heart attack occurs when a blocked artery prevents oxygen-rich blood from reaching a section of the heart. If the blocked artery is not reopened quickly, the part of the heart normally nourished by that artery begins to die. The longer a person goes without treatment, the greater the damage. Symptoms of a heart attack may be immediate and intense. More often, though, symptoms start slowly and persist for hours, days or weeks before a heart attack. Unlike with sudden cardiac arrest, the heart usually does not stop beating during a heart attack. The heart attack symptoms in women can be different than men.

What is cardiac arrest?

Sudden cardiac arrest occurs suddenly and often without warning. It is triggered by an electrical malfunction in the heart that causes an irregular heartbeat (arrhythmia). With its pumping action disrupted, the heart cannot pump blood to the brain, lungs and other organs. Seconds later, a person loses consciousness and has no pulse. Death occurs within minutes if the victim does not receive treatment.

What is the link between the two?

These two distinct heart conditions are linked. Sudden cardiac arrest can occur after a heart attack, or during recovery.  Heart attacks increase the risk for sudden cardiac arrest. Most heart attacks do not lead to sudden cardiac arrest. But when sudden cardiac arrest occurs, heart attack is a common cause. Other heart conditions may also disrupt the heart’s rhythm and lead to sudden cardiac arrest. These include a thickened heart muscle (cardiomyopathy), heart failure, arrhythmias, particularly ventricular fibrillation, and long Q-T syndrome.

Fast action can save lives. What would you do if someone experiences a heart attack or cardiac arrest?

What to do: Heart Attack

Even if you’re not sure it’s a heart attack, call 9-1-1 or your emergency response number. Every minute matters! It’s best to call EMS to get to the emergency room right away. Emergency medical services staff can begin treatment when they arrive — up to an hour sooner than if someone gets to the hospital by car. EMS staff are also trained to revive someone whose heart has stopped. Patients with chest pain who arrive by ambulance usually receive faster treatment at the hospital, too.

What to do: Sudden Cardiac Arrest

Cardiac arrest is reversible in most victims if it’s treated within a few minutes. First, call 9-1-1 for emergency medical services. Then get an automated external defibrillator if one is available and use it as soon as it arrives. Begin CPR immediately and continue until professional emergency medical services arrive. If two people are available to help, one should begin CPR immediately while the other calls 9-1-1 and finds an AED.

Sudden cardiac arrest is a leading cause of death

Over 320,000 out-of-hospital cardiac arrests occur annually in the United States. By performing Hands-Only CPR to the beat of the classic disco song “Stayin’ Alive,” you can double or even triple a victim’s chance of survival. Learn the two easy steps to save a life at heart.org/handsonlycpr.

Heaven Breaking In

ryan_blogFor September, I would like to share my sister-in-law Cynthia’s blog called “Heaven Breaking In”.  She too believes that miracles abound!

A coincidence is defined as, “a remarkable concurrence of events or circumstances without apparent causal connection with each other.” There are times in my life when the “apparent causal connection” is what theologians call “the prompting of the Holy Spirit.” For example, one afternoon I decided to stop at the CVS Pharmacy. As I closed the car door I noticed a friend who was walking away from her car, and it was still running! It turns out she had just come from the hospital, her child was asleep in the car and she needed to pick up his chemo prescription. I ended up sitting in the running car while she went to fill the prescription. I had not originally planned to stop at the store but did so because a thought came to me, “You’re driving by this CVS; just stop in here.” How was it that I was at that CVS at the very moment that she needed help? I wonder if she may have asked God in desperation, “What am I going to do here?” For me, in these moments when love and compassion are shared, when two people experience the connection we all share in Christ, it seems easy to credit the work of the Holy Spirit.

I experienced something this summer that falls into the category of coincidence. My Dad was in the hospital, and we had just finished a long conversation about his desire to have a “reasonable death.” The conversation was difficult and yet at the same time so typical of my father to talk about goals and process. It was a beautiful, humidity-free summer day so when I went down for lunch I decided to walk around the hospital campus. I figured all I had to do was keep turning right and I would find my way back. As I turned the third corner I had this sense that I needed to turn back. I kept walking but the feeling became even stronger. Not one to ignore my gut feelings, I turned around.

As I walked back up the very same sidewalk that I had just been down, I happened to look down. There it was: a plastic Coke bottle with the name, “Ryan.” For any other person that name might mean nothing, but to me it was the name of my nephew who died suddenly at age 19 while home from college. I stopped and stared at it for a long time. I even took a picture because, really, who’s going to believe me?

I found great comfort in the presence of that Coke bottle. It reminded me that Dad would be in heaven with others I have loved and lost. It even gave me a sense that God knew my pain and that God would be walking with us through this. Of course anyone who wants to can explain this away as happenstance, but for me, to see that Coke bottle on that difficult day in July, well, it was heaven breaking into my world—if only for a moment. It was a reminder of God’s gracious love and the promise of eternal life.

– See more at: todayisawgod.org

Italy…The Magical Country with Beauty and Brains!

August, 2015IMG_1869

Italy…the magical country with beauty AND brains!

Summer Vacation in Italy! This was a dream come true for the Lopynski family. Five cities in two weeks with no car…what an adventure!  We flew to the Island of Venice and traveled through the winding canals by vaporetto. Two days later we arrived in Florence, touring the rich regions of the Italian Renaissance; Tuscany, Cinque Terre, Siena, Naples, and Rome. Finally, our journey ended at the Amalfi Coast taking in Sorrento, Positano and the island of Capri.  From the soaring mountains and breathtaking coastline, to the welcoming natives who greeted us at every turn with their romantic language and mouth-watering cuisine, Italy was indeed magical!

Mandatory EKG screening in Italy! Our family’s love for Italy was further ignited as we were reminded of a law that was formulated back in 1982. This Italian law mandates routine EKG screenings for young athletes fueling the debate about feasibility of such testing in the US. The general thinking in the US is that heart testing is a good idea but it is too expensive, especially when the prevalence of death is so low.   An Italian study was done from the onset of the screenings indicating that sudden death during competition had decreased nearly 90 percent since testing began. This would indicate that EKG screenings can work!

Below are a few successful models of interventions using EKG’s. The contrasting policies with regard to national standards on screening young athletes for cardiovascular abnormalities are as follows:

Italy  By law, all competitive athletes are required to undergo physiological testing prior to competing. This consists of a history, physical examination, urinalysis, resting and exercise ECG, and pulmonary functioning test. All of these tests are conducted by a sports physician. If there are abnormalities, further screening of ECHO (echocardiography) is required.

  • A study of 4,050 Italian national team athletes revealed high levels of efficiency of 12-lead ECG in detecting HCM in young athletes. Athletes with HCM were not allowed to compete.
  • Trends in cases of sudden death in screened and unscreened athletes were monitored over 25 years. Sudden cardiovascular death accounted for 55 deaths in screened athletes and 265 in unscreened athletes. Overall, there was an 89% decrease in incidence of athlete death due to cardiovascular abnormalities.

European Association for Cardiovascular Prevention in Sports Cardiology:  Heart screening is supported by the International Olympic Committee, and follows the Italian strategy, with personal and family history, physical examination, and 12-lead resting ECG. FIFA also performed pre participation screening of all soccer players in the world championships in Germany in 2006.

United States:  As of 2014 there was no national policy for the screening of CVD or sudden cardiac death in young athletes, though many screening programs were being run by private entities and various non-profit organizations. Most state laws require competitive athletes to undergo a physician-mediated physical examination and history. ECG or echocardiograms are rarely used. A medical history and physical examination were found to have little sensitivity or power to detect HCM or other risk conditions. It is considered that routine screening is not justified due to the low incidence of HCM, approximately 2 in 1,000 individuals.

Through 2015, the Ryan Lopynski Big Heart Foundation has provided EKG screenings to over 2,000 young adults. Of those screened, 100 came up abnormal and they were referred for additional tests. We received feedback from 2 families whose children had Wolfe Parkinson’s White Syndrome and had to have operations to correct this heart abnormality. The Ryan Lopynski Big Heart Foundation understands that abnormal EKG readings may result in no heart problem after further evaluation. We will continue to educate parents and young adults on the potential for false positives and we are working with the medical community to identify ways to reduce them. We believe that the value of EKG screening is compelling. Given the studies that we have reviewed and our own experience we believe that EKG screenings of young adults save lives.

When life comes full circle…

dillon meningitisMy son Dillon was only a week away from graduation. It was an exciting time as his senior year was coming to an end. Wednesday, June 10, was Dillon’s last day of school with the anticipated senior locker bay paper toss. There were lots of pre graduation celebrations, and he still had prom and his All Night Grad Party to attend.

But on Monday, Dillon was suffering. He was congested, coughing, and achiness had taken over his whole body. The doctor gave him an antibiotic for an acute sinus infection, and sent us on our way. But by Thursday morning at 5:00am I awoke to a moaning sound. Dillon was on the couch in the family room with his head in his hands. He mumbled that he had just thrown up, his head was throbbing, and the pain had gone into his ears and down his neck.

What? He never gets headaches! Without hesitation, I yelled to my husband, Johnny, “We are taking Dillon to the hospital”! Knowing that I am not an alarmist, he knew something was terribly wrong.

Out the door we went to Fair Oaks Hospital’s Emergency Room. Dillon could barely open his eyes. They admitted us and took an ex-ray indicating his sinuses were severely infected. What? Is that it? I told the doctor there had to be something else wrong as my son could barely lift his head. He agreed and quickly order a spinal tap. The results were conclusive. Dillon had Meningitis.

Immediately, after the prognosis, doctors and nurses rushed to hand us protective masks, hooked Dillon up to an IV and then he was gone.

I forced myself not to think of the worst. After all, this was the hospital Dillon was born in 18 years ago. Love, Laughter, Life! But then another reality rushed into my thoughts. My sister Connie, and Johnny and I were now sitting in the room two doors down from where his brother Ryan at the same age of 18, had suffered Sudden Cardiac Death. OK. True. But we were in Room 7, which was Ryan’s lucky number! My head was spinning, “Think positively, think positively”, I kept repeating in my head.

I did not leave Dillon’s side in the hospital for the next 5 days. They were not sure whether it was Viral or Bacterial Meningitis. He was pale and feverish and could not keep anything down. I have never seen Dillon so sick. No prom, no All Night Grad Party and no graduation rehearsal. But as the days went on he slowly regained his strength and he was released to attend his graduation.

As they wheeled Dillon down to the lobby of the hospital while I walked to retrieve the car, I stopped suddenly. There at the door was a mother cradling her tiny newborn baby.   Memories flooded my heart of that same moment I had 18 years ago. My heart suddenly filled with gratitude and I smiled while tears rolled down my face. I had to say goodbye to one son, but this one was coming home.

Another subtle blessing…

shannon and momEvery year, since 2009, my three children get their hearts checked thoroughly with an EKG, Stress Test, Holter Monitor, and an Echo Cardiogram. Obviously, we do not want a recurrence of SCA in our family so we are taking every precaution available to us. With a sigh and push back from the kids, we drive an hour away with the combination of tests taking up a good part of their day.

One spring morning in 2012 with the testing in progress, the doctors detected an arrhythmia in Shannon’s Stress Test. We were of course taken by surprise, as she was now a rising senior and soon to be a starter on the girls Robinson basketball team. She had played basketball since 4th grade, and had a great bond with all her Robinson teammates. Senior year was going to be her year!

The doctors suggested that she could have CRVD (chronic rheumatic valve disease) and that we should have an ablation surgery done at Children’s Medical Center. In the meantime, they suggested putting her on a beta-blocker to slow down her heart rate.

Cardiac ablation is a procedure that is used to scar small areas in your heart that may be involved in your heart rhythm problems. This can prevent the abnormal electrical signals or rhythms from moving through the heart. During the procedure, small wires called electrodes are placed inside your heart to measure your heart’s electrical activity. When the source of the problem is found, the tissue causing the problem is destroyed.

Thankfully, the six-hour surgery went well, and CRVD was not detected. She was advised by her doctors not to continue playing basketball, as the source of the problem was still unknown.

In this type of situation it was easy to get frustrated but our family has learned to rise to the occasion. God always seems to work his magic and when one door closes, the other one opens. Shannon became my new running and spinning partner, exercises she never thought she would like. She took this setback and for the duration of the summer, replaced her basketball practices with swim, spin classes, yoga, running and weight training. Now Shannon plans to become a spin instructor and has since run her 3rd annual ½ marathon.

We continue to keep Shannon’s heart monitored as she continues to enjoy life to its fullest. Another subtle blessing from above!