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!


Another angel…Peggy Fox

Peggy appeared at McLEvery Heart Counts | The Ryan Lopynski Big Heart Foundationean 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…

 

 


Thank You

Rena Committee 2015

Our Committee Rocks!

Hi friends,

Thank you all for attending our 3rd 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 26th 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

 

 


Commemorating a HEALTHY HEART with a tattoo!

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


Sweet memories of summers past…

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.

blog 5recipient Connor chess

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 in handThe 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?


A Christmas Present to share…

RobbieChristmas 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


Thanksgiving Tribute to Family and Channel 8 News!

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