My 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.

Every 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 4^th 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!

Peggy appeared at McLean High School like an angel out of nowhere. Arriving with her son and all the other parents with kids in tow, she was eager to receive a “normal” EKG reading for her teenager, from an on-site cardiologist who would read his results. “That is PEGGY FOX”, beamed Melissa Banks, Director of Operations for the foundation. “She is with Channel 9 news!” We all commented that she was even prettier in person than on TV.

After the screening she came up to my husband and me, impressed with the organization and flow of the event. She was amazed at the amount of teens willing to show up on such a beautiful spring day in May, and asked if she could bring her camera back to film our screening. We of course agreed, excited at the opportunity to spread awareness about Sudden Cardiac Arrest (SCA).

Like a whirlwind, Peggy left the school, stopped by the annual McLean Day at Lewinsville Park with her family, and was back 2 hours later. With her TV camera in hand, she summarized our event with her grace and style. She then agreed to emcee our annual “Every Heart Counts” fundraising gala with even more grace and style. Peggy advocated on our behalf, believed in our cause and asked for nothing in return. She was our gift.

Peggy Fox appeared like an angel out of nowhere.

Here is her beautiful news clip…

Our Committee Rocks!

Hi friends,

Thank you all for attending our 3^rd annual Every Heart Counts Gala to support our cause. Thank you also for those of you who signed up and could not attend the rescheduled event. Despite the “white-out” cancellation, we had over 300 registrants! Everyone rallied to show their support and for that we are so very grateful.

Although we’re still celebrating such great success from last weekend, there is still a lot to get excited about in the coming months! The money we raised will help us continue in our efforts to screen our teens this spring. If you are interested in volunteering your time or signing your child up for an EKG screening, please go to our website at www.ryanlopynski.org next week.

As for the future of the Gala, we’ve decided next year to toss our heels to the side and lace up our running shoes! As done in previous years with the Run for Ryan at Virginia Tech, we plan to keep our hearts healthy with a local run in 2016.

Mark your calendar for next year’s Every Heart Counts Run at Fairfax Corner on July 18, 2016 (Ryan’s 26^th birthday). It will prove to be a heart-healthy run for the whole family!

Many HEARTFELT thanks to you all, and as always… don’t forget to SCREEN YOUR TEEN!

Every Heart Counts Gala Photos Click Here and Tag Yourself!

The Ryan Lopynski Big Heart Foundation

www.ryanlopynski.org

info@ryanLopynski.org

Ethan Tourtellotte

My first blog highlighted a very special young man, Ethan Tourtellotte, who discovered he had a heart abnormality called Wolffe Parkinson White Syndrome. This was identified at his free EKG screening hosted by The Ryan Lopynski Big Heart Foundation last spring. After his surgery, he wanted to honor the process by getting his first tattoo to commemorate a very successful ablation at Children’s National Medical Center, a surgery that could have saved his life!

Dr. Jessica Colyer, a wonderful cardiologist at Children’s National Medical Center in DC, donated her valuable time by interpreting the screenings at our free EKG events last spring. She also was instrumental in helping Ethan design his first tattoo. Now Ethan is our official walking billboard to help us spread the word about Sudden Cardiac Arrest (SCA)…the #1 cause of death in young athletes in the United States!!!

Here is his email to Dr. Colyer:

Dr. Coyler,

Ethan here, I hope all has been well with you! I am emailing you to update you on the progress of my tattoo and I am excited to inform you it is complete. I decided on merging parts of the WPW screening with the normal screening (pictures attached). I hope the tattoo is as accurate as possible to the EKGs. If not, fortunately most people looking at it have no idea what it is! I chose not to do the anatomical heart with the EKG’s as that would have been very intense for my first tattoo. I took your advice and made sure to choose a reputable place. I went to Way of Ink in Springfield and had a great experience. Thank you for helping me through this whole process; I guess from the beginning of my discovery of WPW to the recent tattoo consultation…. you have been amazing!

Ethan Tourtellotte

From 2002 until 2008 my 4 children swam for The Country Club of Fairfax. I remember it fondly as the whole family would participate in all the activities together. Johnny and I would spend our Saturdays volunteering at the meets with the other parents timing the kids, inputting stats into the computer, lining the age groups up to swim, or serving snacks. The summers were filled with Friday night potluck dinners, progressive dinner parties, lip synch, and lock-in’s (chaperoned sleepovers at the pool). Finally, all the families would celebrate the end of the season with the formal awards banquet. This was highlighted by the senior send-off video’s that were creatively choreographed every year by Paul Thuman such as the one from my sweet Riley Roo…

A recent member and Swim Team Rep from the club contacted me to let me know that although she did not know Ryan, she was touched by the leadership award presented in his honor every year at the Annual Dominion Country Club All Star Swim Meet. She shared with me the honorary winners to date of the “Ryan Lopynski Award of Excellence”. She also included a picture of the 2013 recipient, Connor McGrath from Country Club of Fairfax, presenting the award to the 2014 winner Nick Kulic from Evergreen Country Club.

2013 recipient Connor Chess (right) presents the award to 2014 recipient Nick Kulic

2009: Alex Rudolph, International Country Club.

2010: Will Henry Mullins, Country Club of Fairfax.

2011: Michael Speer, Springfield Country Club

2012: Ryan Natal, Trump National

2013: Connor Chess, Country Club of Fairfax

2014: Nick Kulic, Evergreen Country Club

The award was inspired by two avid CCF swim team moms, Suzanne Mims and Nancy McGrath. Jerry Heilbronner meticulously designed the award as a “pay it forward” token after his daughter passed away years prior. The trophy reads:

“The swimmer who most exemplifies Sportsmanship, Leadership, Dedication and Team Spirit”

The team rep emphasized the fact that this award was such an honor for the swimmers to receive, and a beautiful way for Ryan’s legacy to live on. But the other reason the Team Rep contacted me was to ask me for advice after she learned of our foundation and its mission. Her pediatrician detected a heart murmur in both of her young children. She was told it was very common and not to worry. As a mom with very active athletic elementary school age children she wanted to know if her children should get screened. My answer of course was a resounding, YES!

The reality is, you are never too young or too old to get an EKG screening. They take only 7 minutes and detect up to 70% of heart abnormalities. Every 2 days a child dies of SCA in the US. It is the #1 leading cause of death in teen athletes. In the future, my hope is to include an EKG screening at every annual athletic physical. Isn’t it time to screen your youth before it is too late?

Christmas is over but the beauty of its presence still rings on in my heart. I received an exceptionally special gift during the holiday. This present brought so much joy to my husband and me that I wanted to share the story.  It is a testimonial from a mom whose son attended our screening at McLean High School in Fairfax, VA. last spring. She wrote:

My son, Robbie Arwood, is a 16 year-old Sophomore in High School.  He is a 6’3″ athlete who has always played every season of sports and has been active in Basketball, Soccer and Marching Band and we have always thought him to be a very healthy young man.  Over the last 3 years, he had a few episodes of dizziness and shortness of breath during physical sports play.  The few times this happened, we took him to the doctor and each time he was sent home as being in great condition with a diagnosis of being dehydrated.  I was not concerned at all as these issues really were rare and seemed minor.  My mom saw an email about your free EKG Screenings at McLean High in May of 2014 and she insisted that I take my son.  As soon as the EKG was finished, we took the results down the hall to one of the volunteer doctors where she read my son’s EKG. The doctor could see the Delta Wave right away and really urged us to go see a cardiologist.  We did and I am so thankful.  Robbie was diagnosed immediately with a high-risk case of Wolff Parkinson White Syndrome, which if left untreated, can ruin the heart.  His doctor suggested Cardiac Catheterization Ablation heart surgery to repair this birth defect and Robbie just went thru this procedure on December 10th.  The surgery is minimally invasive and has a very high success rate for correcting the underlying issue.   Robbie’s surgery went very well and his doctor says he will likely be playing basketball again by the first week of January.  I can honestly say that this foundation likely saved my son’s life as I do not think Robbie’s WPW would have been uncovered had we not done the EKG.  I am so thankful for The Ryan Lopynski Big Heart Foundation for helping me to save my son and I have so much respect for Ryan’s family for taking such a personal tragedy and turning it into such good for so many.  I will be forever grateful!

We are grateful that Nikki took the time to share her son’s story. It is youths like Robbie, who inspire us to continue our screenings. We hope to save more teens in 2015! God Bless!!!

Peggy Fox from WUSA featured his story February 18, 2015

8News Investigates: Sudden Cardiac Arrest #1 Cause of Teen Athlete Death

It is the Saturday before Thanksgiving 2014. The preparation for Thanksgiving began yesterday as Shannon safely arrived home from Va. Tech for Thanksgiving break. Erin was excited to finish her first week with her own Cardiac patients at her new job at INOVA Fairfax Hospital. Dillon, played in a scrimmage to kick off his last Robinson Varsity basketball season, and Johnny finally arrived home from a week of business travel, from Nashville to Chicago, and then to Tampa. Whirlwind!

But the real excitement yesterday hit our house at 12:00 pm as the Channel 8 News truck arrived lugging large bags filled with commercial grade camera equipment, lights and microphones.   Kristin Smith, the news anchor from Richmond, had emailed me last week in search of other organizations in Virginia who have provided free EKG screenings like ours. I told her we were it.

So there she stood in our kitchen yesterday with Abraham Stubblefield the camera-man/producer. She was eager to hear our story after a local family lost their own daughter, Cameron Gallagher, to SCA. Cameron had just completed her first ½ marathon at the Shamrock Va. Beach Marathon in March. She crossed the finish line, collapsed and died.

Despite our ever-present heartache, we shared our story as we have done for 5+ years, eager for viewers to understand how important it is to screen your teen.

Today, as I reflect on last week filled with so much excitement, great energy and endless opportunity, it all revolves around family. So it is not surprising that I consider family as my most precious gift and the part of my life that I am most thankful.   As a family who has always been close, we have become even more so with Ryan’s intervention from Heaven. With his daily presence in our lives, he guides us through the process of screening our teens, fundraising and spreading awareness of Sudden Cardiac Arrest. Fortunately for us, the media is recognizing the gravity of this issue, as more and more families experience the painful and unexpected loss of a child to Sudden Cardiac Arrest.

Please share the link below, to continue to ignite the flame of SCA awareness. I am thankful this holiday season for Kristen and Abraham with Channel 8 news Richmond, for giving the Lopynski and Gallagher families the opportunity to share their stories.

View Complete WRIC News Story

Video Courtesy of WRIC News, Copyright 2014 Young Broadcasting of Richmond

My oldest daughter, Erin, just accepted her first “real job” offer. Wow! How did it happen so fast? She graduated only a year ago from Va. Tech, and just completed her Dietetic Internship. A few weeks ago, she passed her test to become a Registered Dietitian…. and then BOOM!!! A week later she lands her first “real job” at INOVA Fairfax Hospital, in the CARDIAC Rehabilitation Center. Really? Cardiac? Out of all the departments in the hospital she ends up in the cardiac center? What is the probability? Thank you Kim Fulton for the referral, and as always, thank you Ryan for working your magic from the heavens!

Erin starts her job on Monday and we couldn’t be more proud of her. She is excited to learn about the nutritional demands of cardiac patients, as she shares her knowledge with the many cardiac patients needing dietetic guidance. As Erin becomes more knowledgeable and makes meaningful connections at INOVA, our foundation will continue to flourish as she passes on invaluable information. Our family continues to be humbled by the many blessings that are given to us, and as we approach the Thanksgiving holiday, we are feeling truly thankful.

BTW, feel free to connect with Erin on Linked In: www.linkedin.com/pub/erin-lopynski-rd/33/a0/b55/

Today I am writing my first blog.  It is also my youngest son Dillon’s 18^th birthday.  He is the same age as our oldest son, Ryan, who passed away from Sudden Cardiac Arrest  (SCA) 5 years and almost 6 months ago today.  There is not a day that goes by that I do not talk with Ryan, thank him for giving us those very precious 18 years, and ask him for guidance in helping us to save other teens that may have SCA.  It is his powerful presence that ultimately inspired our foundation.  He is here, he is vocal, and he is inspiring our every move as he holds our hand.

My intention for blogging is to spread the word of Sudden Cardiac Arrest. (SCA).  In this first blog, I want to share the story of Ethan Tourtellotte, one of Dillon’s best friends who lives in our community of Hayden Village. He is one of the fortunate teens to have been screened.

Here is his story:

During the summer of 2013 before entering my junior year at Fairfax High School, I attended one of the first free EKG screenings in Fairfax County hosted by The Ryan Lopynski Big Heart Foundation.  I wanted to support my neighbor and one of my best friend’s, Dillon Lopynski, as well as his family’s mission.  The cardiologist at the event discovered an abnormality from my EKG results. After my follow-up appointment, it was discovered that I had Wolf-Parkinson-White (WPW) Syndrome, a potentially fatal heart condition with no symptoms. I was then referred to the Children’s National Medical Center for my surgery. It was a five-hour procedure that corrected my heart condition. Now I can live life to its fullest as I continue to play Varsity Football.  I feel blessed to be alive, thanks to The Ryan Lopynski Big Heart Foundation!