GAINESVILLE, Fla.—On average, 22 people a day die waiting for a transplant.
For one young woman, that statistic hits very close to home. Without a new heart, she knew she likely wouldn't survive.
On Friday she shared her story at the Go Red for Women First Coast Luncheon at Florida Blue.
"It began as a regular day," recalled Annemarie Ward. "I was 7 years old and my mom needed me to walk the dogs."
That day, without warning, Annemarie's childhood changed forever.
"She looked back and I just passed out - just blue faced on the street, and in that moment, she entered into sheer panic and didn't know what was going on," said Annemarie.
Her mother watched as her then 7-year-old daughter was taken away in a helicopter. At the hospital, her parents got news that no mom or dad ever wants to hear.
"They thought I was going to pass away that evening," Annemarie said. "Pass away, or that I would be mentally challenged for the rest of my life. They said, 'this child, from what she has endured, will have complications forever. She will never be a normal kid.'"
Annie, as her family calls her, was only in second grade. She was diagnosed with a heart disease that threatened to take her life.
"'Hypertrophic Cardiomyopathy' is a really big word for enlargement of the heart muscle. Your muscle is supposed to be about the size of your fist and as I grew older and older my heart muscle thickened more and more."
After three weeks in the hospital, she got to go home, but life was drastically different.
"It was tough because my sister was super active," Annemarie said. "She was the volleyball star, basketball star. There were sports and activities I wanted to pursue and I actually tried to pursue dance one time when I was 14, and ended up having a heart attack on stage. And it was just so upsetting my heart condition was controlling my life."
Going to off to college was a huge milestone, but Annemarie's freshman year was almost the last year of her life.
"By the time I was 18, my heart became so unhealthy that I started fainting and having heart attacks just trying to walk to class... I really did wonder why life was worth living," she said.
Her only hope was a new heart.
"I think she came very close to dying," said Dr. Jay Fricker, her pediatric cardiologist at UF Health Shands in Gainesville. "Her heart was massively thickened and enlarged. She has at least two episodes of near sudden death."
Her doctors told her it was a miracle she was alive.
"He sat down and said, 'I have no idea how you are functioning and going to class and walking up stairs with the heart you had.' He said for my body proportion and age, he said that is the biggest heart he had ever seen. I think it weighed about seven pounds," said Annemarie.
Then one day, while she was doing homework, her phone rang. Her mother asked if she was sitting down.
"She said, 'Annie they have a heart for you. You have a heart,'" Annemarie said.
Annemarie left her dorm room in Lakeland and made the two-hour trip to Gainesville. She walked into Shands not sure what to expect, but ready to get a transplant.
"I describe it as the most peaceful moment I have ever felt in my entire life. I have never been so sure of anything in my entire life... It was a sense of tranquility, peace, acceptance. I knew my life would be changed forever," said Annemarie.
But the heart waiting for her meant another family had to say goodbye to their 14-year-old daughter.
"It happened April 19, 2012. I was at work working in our local hospital in labor and delivery about to end my shift and got the call that was about to change everything," Tracie Perbtanie said.
Tracie's daughter, Raivyn, had been in a terrible accident. The four-wheeler she was riding crashed. She was injured so badly she had to be airlifted to Shands in Gainesville. Forty-eight hours later her daughter was declared brain dead.
"They came to us and said Tracie we can't do anymore. I said, 'okay, call Life Quest. We know what we need to do....' I wanted to fight for that heart because it was a heart of gold."
She knew what they needed to do because Raivyn had told her. Raivyn made her mind up when she was just 10 years old after her cousin, an organ donor, was killed.
"She said, 'mom if anything ever happens to me that's what I want. I want to be an organ donor,' and I said do you understand the impact. She said yes... For the next four years she would tell anyone and everyone if anything happens to me I'm going to be an organ donor and you should too and this is why," said Tracie.
Raivyn donated four organs. Her mother sent letters to all of the recipients and for months wondered if she would ever hear back.
"Christmas was approaching and I said if I have one wish it would be to hear from somebody, and if I had to pick I would love for it to be heart recipient just because of what the heart symbolizes," said Tracie.
Annemarie wasn't spared from grappling with the fact that she gets to live because someone else died.
"The first thing I think of is when I first got my letter from my donor family. When finally opened it and read it, I think that was the hardest I've ever cried in my entire life. I felt guilty. I felt happy. I felt alone. I felt safe," said Annemarie. "I just couldn't believe I got a second chance at life because of their decision."
The day before Mother's Day, 2013, Tracie's wish came true. She got to meet Annemarie, in whom part of her daughter now lives.
"My world changed in a matter of seconds. Theirs was something they faced every day and to see her flourish and be able to tell that story is phenomenal," said Tracie. "I tell her all the time you're my heart daughter and that's how it is for anyone who meets us, and I let them know that she is our daughter."
In April, Annemarie graduated college. Her cardiologist, Dr. Jay Fricker, cheered her on as she walked across the stage.
"No question about it," said Dr. Fricker. "She wouldn't be here... I think God has a plan for all of our lives. I think God has a plan for her life and we are expecting great things from her."
"I want Raivyn's mom to know I will do everything in my power to make sure that her daughter's heart is safe and that her daughter made a difference and will continue to make a difference," said Annemarie.
Annemarie is now a national spokeswoman for the American Heart Association sharing her story, providing hope and inspiring others to take care of their heart.
"I think I got a second chance because I think I'm going to make a difference in this life and I'm going to meet people and really going to change something or someone whether it's a million lives or just one. I think Raivyn saved me so I can impact someone."
"Life is a dance and what Raivyn taught us is to dance this dance we call life. She did that while she was here and Annie is continuing on the very same journey," said Tracie.
