Gain Insight and Comfort from Real-Life Stories of Myocarditis
Candace's Corner
I’m 20 ½ years out from a heart transplant due to a catastrophic brush with Giant Cell Myocarditis. They say what doesn’t kill you makes you stronger, and that has certainly been true for me. I survived; many do not. Too many people die from myocarditis in their sleep. Some don’t make it to a medical center with an Advanced Heart Failure program which will have the skilled physicians, devices, testing capability and nurses to care for a patient with this diagnosis. Others still suffered disease progression that was faster and more complex than medical science could keep up with. Others still simply are not strong enough for the insult of myocarditis to their bodies. Why I lived and so many others did not is a question I cannot answer but is one for a higher power. We are all plagued by this existential question that also includes our grief for the lives of our donors who saved our lives.
Myocarditis Survivors
Pediatric
Francesca’s Story
February is Heart Month: The Journey That Made Us a Heart Family Did you know that 1 in 100 babies is born with a congenital heart defect? Or that 120-150…
James’ Story
James’ Story told by his mother: On July 12, 2023, I went into labor of 36.5 weeks with James. He arrived happy, healthy, and hungry that evening. Everything checked out…
Andrew’s Story
Andrew’s story as told by his mother… On June 28, 2023, our 11-year-old son, Andrew gave us the biggest scare of our lives. It was our first day on our…
Jyiare’s Story
Jyiare’s story as told by his mother… On August 3, 2023, my 6-year-old son, Jyiare, faced a harrowing health crisis. While I was at work, my sister called with alarming…
Lily’s Story
Lily was a joyous and healthy 9 year old, and up until January 2017, she was never sick and rarely if ever missed a day at school. On a January…
Tahlia’s Story
Two weeks before our life changed forever, Tahlia got a cold like any other normal kid with a runny nose and fever. 2016 is a year our family will never…
Gracie’s Story
Sept 6, 2017 is a day our family will never forget. Before this date, Gracie was happy, healthy and rarely sick. We were in the back to school routine and…
Noah’s Story
5-year-old twin battled Viral Myocarditis… Until February 7, 2017, Noah was a healthy, high-functioning autistic boy. On this day, he ran a fever, but showed no other symptoms. He went…
Fletcher’s Story
Four-Year-Old Beats Myocarditis From day one, our four year old son Fletcher has been a ball of energy, only slowing down to sleep. The week of Labor Day 2015, Fletch,…
Owen’s Story
Enteroviral Myocarditis Nearly Claims the Life of a New Baby Boy Baby Owen Went into Complete Heart Failure Days After Birth As told by Owens mom, Kristan Cardwell After having…
Older Children and Young Adults
Newell’s Story
At 18, you think you’re invincible…it was early March 2017 and I began to have really bad chest discomfort and felt out of real life. After 4 days of struggling,…
Riley’s Story
My daughter Riley was 10 years old when she started complaining of chest pains after having a prolonged cough. We took her to an urgent care facility, and they thought…
Kacey’s Story
On Friday, December 30th, 2016, I called my Mom from the floor of my room sweating and crying because I felt like I was about to pass out. The room…
Ke’Mora’s Story
Ke’Mora was blessed with good health. My daughter has never had to stay in the hospital and only visited to get yearly check-ups and shots for school. On September 20,…
Drew’s Story
We hope to one day help other families who might be going through something like I did. “My name is Andrew Hazlett, but I go by Drew, and my Myocarditis…
Aidan’s Story
This will forever be a turning point in our lives. I will forever be grateful because I know not everyone gets a second chance with their babies. This is Aidan’s…
Austin’s Story
College Freshman Beats Myocarditis November, 2015 and a Thanksgiving week well never forget. Our son, Austin, is a 19-year-old freshman at Arizona State University. Austins story is very similar to…
Michael’s Story
High School Senior Beats Myocarditis Michael’s Flu-Like Symptoms Turned Into the Unexpected It was mid June of 2014 and I had been feeling some flu like symptoms for a few…
James’s Story
Find Out How One Teen Beat Myocarditis After a Year and a Half of Recovery James Now Helps Fund Myocarditis Research Im 18 years old. Im in my first semester…
Alex’s Story
Discover the Miraculous Recovery of a Teen Boy After Myocarditis Nearly Claimed His Life Doctors Call 15-Year-Old Alex a Myocarditis Legend As told by Alexs mom, Sue Hall Monday, St…
Matt Day’s Story
Find Out How an Active 21-Year-Olds Heart and Body Shut Down Unexpectedly Matt is Left Searching for Answers as to Why He Nearly Died My heart ordeal began back in…
Casey’s Story
Find Out How a Seemingly Healthy 16-Year-Old Survived Myocarditis Caseys Intestinal Symptoms Led to a Heart Attack As told by Caseys mom, Libby Blevins On May 27, 2010 (my birthday),…
Adult
Jordan’s Story
One ordinary weekday in January 2022, sitting in my apartment, I began to feel a slow-onsetting pain in my chest. This sensation was foreign to me, intensifying to the point…
Cheryl’s Story
“I am Grateful for the Myocarditis Foundation” By: Cheryl Whaley Fort Worth, Texas In September 2022 I had a cold with laryngitis. About 3 weeks later, I began feeling…
Maria’s Story
My name is Maria. I live in the U.K. I was diagnosed with Myocarditis when I was 11 years old. Here is my story… One day I started feeling really…
Treenee’s Story
It was July 2019, I was 36 and healthy with bundles of energy. I was a workaholic. During this month I had caught a flu which at the time I…
Catherine’s Post-COVID Myo-Pericarditis Story
It was early January 2021 when I started having some cough, chest pain and difficulty breathing. It wasn’t too bad, but I knew it wasn’t normal. I had a COVID Test…
Steven’s Story
Healthy 28-year-old struck by Viral Myocarditis… Leading up to this date, I was incredibly busy at work, enjoying the weekend with friends, traveling the world as much as I could,…
Paul’s Story
Harrowing Story of this Myocarditis Survivor Paul triumphs over myocarditis and goes onto become a lawyer My myocarditis story begins like so many others. I came home from a…
Alice’s Story
Woman Continues to Live with Symptoms of Myocarditis Alice is Thankful for Her Doctors, Friends and Family On July 6, 2010, it was just another normal day – I…
Brian’s Story
Heart Transplant Recipient Competes in Swimming and Triathlons Brian Suffers with Myocarditis for Decades Before Receiving a Heart Transplant Brian Barndt, a Wake Forest, North Carolina resident and Total Immersion…
Jesse’s Story
Discover the Miracle of a Heart Donation A Special Message from Jesse to the Family of His Donor December 20, 2011 To the Family of My Donor: I have no…
Giant Cell Myocarditis Survivors
Pediatric
Please contact the myocarditis foundation if you or a family member has survived pediatric giant cell myocarditis.
Older Children and Young Adults
Benjamin’s Story
14-year-old on way to State Championship… Ben (14) was on his way to being state champion in all four areas of Taekwondo and preparing for his next tournament in Kansas…
Dominick’s Story
College Student is Now a 10 Year Giant Cell Myocarditis Survivor My name is Dominick Oliver and I am a Giant Cell Myocarditis survivor.Ten years ago, I was diagnosed with…
Adult
Rita’s Story
I was a super healthy 50-year-old woman, working, adulting, and living life, that was until July 20, 2022. On that Wednesday, the 20th, during dinner I became very nauseous.…
Brent’s Story
My story starts on Thanksgiving Day, 2015. It was a beautiful day, and I had so much to be thankful for — a wonderful wife, two children in college, a…
Scott’s Story
Labor Day weekend was finally here which brought with it a few extra days off. I was excited for the break in my hectic work schedule. For about a month,…
Kyle’s Story
At one point, a chaplain came in to pray with me, as my life was hanging by a thread. Driving home from a summer vacation in July, 2017, I started…
Lisa’s Story
REMOTE MONITORING AND A QUICK DIAGNOSIS WAS THE KEY TO MY SURVIVAL OF THIS SO OFTEN DEADLY DISEASE In December of 2016, I was an active, healthy 59 year old…
Patrick’s Story
An Active 44-Year-Old Father Survives Giant Cell Myocarditis In October of 2014 I was an active 44 year old married father of two living in the foothills of Western Maine.…
Vanessa’s Story
Giant Cell Myocarditis Symptoms Mistaken for a Septic Gall Bladder Vanessa Made a Miraculous Recovery and Lives with Her Own Heart As told by Vanessa’s family Vanessa noticed a rash…
Donna’s Story
Young, Pregnant Mother Became Australia’s First Giant Cell Myocarditis Survivor Donna Plans on Living the Rest of Her Life to the Fullest It was Christmas Eve 2007 and whilst wrapping…
Lisa’s Story
Find Out How a Seemingly Healthy Mother Survived Giant Cell Myocarditis Lisas Flu-Like Symptoms Result in a Heart Transplant I was a 37-year-old, healthy mother with a husband and two…
Myocarditis / GCM Victims
Pediatric
Holden’s Story
Holden Ryker Sokalsky was born in June 2019 alongside his two sisters. Having spontaneous triplets definitely threw us for a loop, but our sweet Holden was such an easy baby.…
Banner’s Story
Banner was our oldest child, born May 6, 2011 in Baltimore, right before our family relocated to Turkey. A precocious child with an expansive vocabulary, he was a born leader,…
Jaylyn’s Story
Jaylyn Deandres Harris, Died at 4 years old on July 16th, 2008 On April 16, 2004 God breathed life into a precious baby boy. He was named Jaylyn Deandres Harris.…
Millie Rose’s Story
My daughter, Camila “Millie” Rose Giani was a happy, healthy, energetic ray of sunshine. She had a donut party for her fifth birthday on September 14, 2019. She rarely got…
Sarah’s Story
On Sunday, November 24th, 2019, Sarah came down with a virus. She complained of a headache and broke out with a fever. It was nothing high, just a typical viral…
Mary’s Story
On March 31, 2019, my husband and I lost our oldest child and only daughter to Myocarditis. Half-way through the day on Friday March 29, Mary Elizabeth (we called her…
Lillie’s Story
Lillie Nicole Hall was a vibrant, happy and very loving 3-year-old little girl. She had just started her first dance class – this princess loved music and expressing it in…
Beau’s Story
Our life forever changed July 15, 2017. Before that Beau was a happy two-year-old who didn’t get sick often. Before that Beau was a happy two-year-old who didn’t get sick…
Rian Jones-Cook’s Story
Precious 4 month old loses battle to Viral Myocarditis Rian was a Thanksgiving baby, born on November 16, 2015. Our family gathered and celebrated his arrival with food and festivities.…
Knox’s Story
Viral Myocarditis claimed this 2 1/2 year-old’s-life… Knox Peterson Schwarz was a vibrant, joyful, and loving 2 1/2-year-old boy. He loved chasing after his big brother and sister and swinging…
Connor’s Story
Cough and Flu-like symptoms caused by myocarditis claim the life of an 8 year-old boy He was seen by his doctor for a mild cough… Connor Andrews was an 8-year-old…
Christopher’s Story
Accomplished 10-year-old Pianist Loses Fight to Myocarditis His parents are making a life long promise to educate others about Myocarditis We once had a perfect life, a completely bright future…
Roman’s Story
Precious Boy Loses Battle with Myocarditis at the Tender Age of 17 Months Roman Brown’s Memory Lives On From the moment Roman aka Romeo arrived in the world I knew…
Destin’s Story
Precious Two-Year-Old Suddenly Taken by Myocarditis As told by Destin’s father My name is Deon Johnson. I am the proud father of three until recently. I lost my youngest at…
Quinn’s Story
Beloved Youngest of Four is Lost Suddenly to Myocarditis Quinns Family Turns his Love of Hockey into an Awareness & Fundraising Event Quinn is the youngest of our four…
Kamryn’s Story
Myocarditis Takes 16-Month-Old Angel Kamryn’s family turns to advocacy in the wake of their loss As told by Kamryn’s mother, Keenna My baby girl Kamryn Faith, 16 months old,…
Elysa’s Story
Elysa’s Parents on a Mission to Spread Awareness The Rojas family is determined to teach others about Myocarditis As told by Elysa’s Parents, Jana & Jamie Elysa Louise Rojas…
Lucy B’s Story
Myocarditis Takes this Happy, Young Girl from her Family Lucy B’s spirit lives on in her friend’s and family Lucy Boslem or Lucy B as she was known to many…
Julian’s Story
Julian’s Story Julian, an active loving little boy, was taken suddenly by myocarditis As told by Julian’s mother Julian was a beautiful person inside and out. He was full of…
Rylan’s Story
My Rylan Rylan’s family remembers their sweet, kind boy My beautiful little 4 year old son Rylan lost his life to Myocarditis. The day my heart and soul was ripped…
Melita’s Story
Little Girl Takes Her Last Breath in Her Mother’s Arms the Same Day She Developed Flu-Like Symptoms Family Works with the Myocarditis Foundation to Ensure Many More “Melita’s Moments” As…
Catherynne’s Story
Flu-Like Symptoms Caused by Myocarditis Claim the Life of a Little Girl Cathrynne’s Family Describe Her as Beauty and Spunk in a Small Package Cathrynne was such a joy to…
Melisa Sofia’s Story
Myocarditis Takes the Life of the Little Girl with the Biggest Heart in the School Melisa Sofia’s Memory Lives On Copy consolidated from article published Aug. 14, 2011 Jay Levin,…
Logan’s Story
Find Out Why a Six-Year-Old Boy Died Instantly and Unexpectedly in His Mother’s Arms Logan Will Forever be in the Hearts of Family and Friends As told by Logan’s Mom,…
Luke’s Story
Find Out How Suddenly and Unexpectedly Myocarditis Took the Life of a Young Boy Luke’s Vibrant Spirit Lives on with Family and Friends As told by Joe & Amy Skowronski –…
Older Children and Young Adults
Nolan’s Story
Nolan was just 17, less than 2 months away from his 18th birthday, when he was found unresponsive in his bedroom. CPR was started, but too much time had already…
Leanna’s Story
In early June, 2012, Leanna was treated for flu-like symptoms by her pediatrician, however, the symptoms never really went away. Leanna’s energy was low and she complained of shortness of…
Shelby Rae’s Story
Our nightmare started March 2019, but we did not know we were in the nightmare. Shelby went to the hospital because both arms were going numb. Shelby was a production…
Lexi’s Story
Our sweet, 16-year-old daughter, Lexi had bright blue eyes, a beautiful smile she shared with everyone she met, and an outgoing personality. She loved playing tennis and basketball, but her…
Evin’s Story
I lost my first born, handsome, intelligent, creative, sweet, soft spoken, kind, 20-year-old son Evin, on 01/01/19 suddenly and unexpectedly. As a small child and up until his teens, he was always creating random…
Shaelee’s Story
On Jan 14, 2018 our lives changed forever. My daughter, Shaelee, was 20 yrs. old and a junior at Temple University studying to go to grad school to be a Physician Assistant. Shaelee…
Ryan’s Story
He was only 21 years old. He was brave. He was a fighter and a warrior. He died a sudden and tragic death due to myocarditis. His name was Ryan…
Jessi’s Story
Sept 10 2000 changed my life forever. I received the phone call no parent should ever have to take. Your daughter has been rushed to the ER. Moments earlier she…
Austin’s Story
Taken In the Prime of His Life and at the Top of His Game Austin Lee Vonckx’s Story Austin was 4 weeks into his freshman year at Florida Gulf Coast…
Tyler’s Story
Tyler, Your Beautiful Light Will Shine in Our Hearts Forever Tyler Rosenberg’s Story On May 21, 2014 we lost our beautiful, healthy, and active 19-year-old son Tyler to viral…
Thom’s Story
College Senior Loses Life to Myocarditis Thom’s Family Self-Publishes a Book in Honor of Thom in Hopes of Raising Funds for Research It was the first day of November 2013,…
Christopher’s Story
Learn How Myocarditis Took the Life of a Young College Student Christopher’s Family is Now Dedicated to Myocarditis Awareness He never treated anyone differently. Everyone was a friend. He taught…
Dominique’s Story
Young Woman is Taken Suddenly, Leaving Loved Ones to Remember Her Many Life Lessons She Lived Her Life By “All I can do is my best; Im not going to…
Staci’s Story
Leaving a Legacy: A Heart to Change The Staci Stephens Story As told by Staci’s Mother, Kristen People think that when they have children that they will always raise…
Rhett’s Story
Myocarditis Strikes a Young, Ambitious Teen Rhett’s family remembers their beloved son and brother As told by Rhett’s Family, Steve, Vickie and brother Ryne A gleam in his eye,…
Kristen’s Story
Future Veterinarian Lost Suddenly to Myocarditis Kristen’s family tells her story As told by Kristen’s Parents, Annie & David Myocarditis. A word, a disease that no one in our…
Jessi’s Story
Myocarditis Strikes Vivacious 19-Year-Old Jessi was taken away just as she was beginning her college career As told by Jessi’s mother, Kim Sept 10, 2000 changed my life forever.…
Jonathan’s Story
The Iacuaniello Family Remembers Jonathan Jonathan was only 23 when myocarditis tragically took him from his family. In loving memory of Jonathan – Ken, Nancy, & Kristen Jonathan Kenneth Iacuaniello…
Mackenzie’s Story
Young Honor Student Taken by Myocarditis Mackenzie Moreland’s Story My daughter Mackenzie Renee Moreland passed away from Myocarditis on 10/29/2011. We did not find out the cause of death until…
Caitlyn’s Story
Little Girl Makes a Big Impact on Others During Her Short Life Caitlyn Made Every Day a Great One As told by Lillian and John Vincent Caitie was a wonderful…
Andy’s Story
One Month Short of 15, Young Man is Suddenly and Inexplicably Gone Andy’s Family Works to Spread Awareness and Fund Research on Myocarditis As told by Andy’s parents, Victor and…
Danielle’s Story
Myocarditis Claims the Life of a Young Girl Following Cold-Like Symptoms Danielle’s Parents Hope to Help Prevent this Tragedy from Happening to Others As told by Danielle’s parents, Steve and…
Devin’s Story
Athletic, Healthy 22-Year-Old Died in His Sleep Devin’s Family and Friends Hold Annual Event in His Honor Devin Kravitz, born January 31, 1984, grew up in Leicester, Massachusetts. A very…
Aaleigha’s Story
The Tragic Death of Young Girl Inspired a Rock Concert Fundraiser Aaleigha’s Friends and Family Respond to Death with Action Ashley and Amber Young, sisters from Pittsburgh, Pennsylvania, lost their…
Garret’s Story
Family Lost Their Beloved First-Born Son Unexpectedly to Viral Myocarditis Garret’s Family Now Feel Awareness and Education are Key As told by Garret’s parents Garret Lee Hodges was a loving,…
Jeremy’s Story
Boy’s Life Ends Prematurely with No Warning Sign Jeremy’s Legacy Lives on in His Family and the Lives He Touched As told by Brian Fishman, Jeremy’s younger brother My…
Abiah’s Story
Discover How Myocarditis Stole the Life of 11-Year-Old Abiah Abiah Leaves a Legacy of Love, Peace and Compassion As told by Abiah’s mom, Patricia McElveen Fifth grader, 11-yr-old Abiah, was…
Adult
Sergei’s Story
Sergei Aftandelian’s Story Los Angeles, California Flu Symptoms Led to the Sudden Death of this Young Father and School Principal As told by Sergei’s Family Sergei was a force…
Brandon’s Story
Learn How Myocarditis Took This Healthy Young Man’s Life Just Before His Milestone Birthday As told by Brandon’s family: Ed (Dad), Cathy (Mom), Brittany (Sister), Derek (Brother-in-law) Brandon’s life was…
Christopher’s Story
Christopher Emmanuel Leveque was born on August 15th 1997. He arrived earlier than expected, one month premature and even as a preemie he showed signs of great strength. Chris was…
Shivam’s Story
Never look back unless you are planning to go that way (Henry David Thoreau)… and he did not look back This is the story of our beloved son Shivam Chetan…
Jeremy’s Story
Our family wants everyone to hear Jeremy’s story. We don’t want another family to lose someone they love to this disease. On September 11, 1987, our brother and my parent’s…
Lee’s Story
A Mother’s life was changed forever… On November 22, 2015 this mother’s life was changed forever. In the still of early morning, I knew the piercing sound of the phone…
Shannon’s Story
Shannon Mauldin’s Story El Reno, Oklahoma Shannon, was a healthy 31-year-old mother, wife, daughter, sister, and aunt, who every one depended on for one thing or another. Shannon was only…
Clayton’s Story
Young Healthy Father Dies Suddenly A mothers goal to raise awareness about this deadly disease to help others As told by his mom, Patty Edgeman We lost our son to…
Ashley’s Story
Vibrant and Beautiful Young Woman is Lost Tragically to Myocarditis Ashleys Family and Many Friends Honor her Legacy through Awareness and Fundraising Events As told by Ashley’s mother, Kathy Burgauer…
Brian’s Story
Young Man’s Heart Stops While Playing Basketball with Friends Brian was only 23 when myocarditis took him so suddenly from his friends and family. As told by Brian’s mother, Maria…
John’s Story
Young Man Training for a Marathon Becomes a Victim of Myocarditis John was a healthy 31 year old when he was taken so suddenly by myocarditis As told by his…
Sarah Knight’s Story
A Young Kindergarten Teacher’s Family and Community Remember Her Sarah’s family share the mark she made on the world On September 26, 2011, one word – Myocarditis – changed our…
Ashley’s Story
Myocarditis Suddenly Claims the Life of Beloved Wife, Daughter, Sister, Aunt, Niece and Friend Ashley’s Life Suddenly Ended as it Was Beginning As told by Ashley’s sister, Leslie Where do…
Becca’s Story
Cold Symptoms Led to the Death of a Young, Beautiful Woman Becca Has a Permanent Place in the Hearts of Loved Ones As told by Becca’s family Rebecca, or Becca…
Brad’s Story
Find Out How a Healthy Young Man Lost His Life After Being Sick for Only Two Days Brad’s Family Hopes to Help End Other Tragedies As told by Brad’s family…
Michael’s Story
Discover How Viral Myocarditis Claimed the Life of a Healthy 25-Year-Old Michael’s Family Does Not Want His Life to be in Vain As told by Michael’s mom, Sylvia Kern Michael…
Tim’s Story
Discover How a Healthy 30-Year-Old Died within 15 Minutes Tim’s Flu-Like Symptoms Led to Sudden Death As told by Tim’s wife, Angela Burke On February 16, 2010 my life was…
Mark’s Story
Find Out How Myocarditis Stole the Life of a Young, Athletic Father Mark’s Family Raises Awareness and Money in His Honor On March 25, 2011, dozens of the 14,000 runners…
Jolanda’s Story
Giant Cell Myocarditis Had Never Been Seen in a Pregnant Woman Jolanda and Her Unborn Baby’s Lives Were Taken My sister, Jolanda, and I grew up in a typical Dutch…
Dedicated Doctors, Board Members and Activists
Mile’s Story
Piano and Violin Virtuoso Became a Myocarditis Activist Miles was Inspired to Help Others by a School Project In December 2009 when I was a 17-year-old high school student, I…
Joe’s Story
Myocarditis Survivor Serves on the Myocarditis Foundation Board of Directors Joe Considers Himself a Walking Miracle Mine is a long story…in 1972, at the age of 18, I developed chest…
Candace’s Story
20th Anniversary of the Myocarditis Foundation On March 5, 2005, the Myocarditis Foundation received their official IRS nonprofit approval letter. Dr. Cooper and I had been working on all the…
Dr. Antoniak’s Story
Raising the Awareness of Virus Infection of the Heart Dr. Antoniak Studied the Interactions Between the Coagulation System and the Immune System After a Virus Infection The Myocarditis Foundation research…
Dr. Deng’s Story
Find Out How a Patient Survived Giant Cell Myocarditis and a Heart Transplant Dr. Deng Partners with Survivor to Start Foundation I became familiar with giant cell myocarditis while practicing…
Dr. Cooper’s Story
Discover How a 49-Year-Old Patient Survived Giant Cell Myocarditis Dr. Cooper Partnered with Survivor to Start Foundation When I was a cardiology fellow at Stanford University, I had a patient,…
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