The Ultimate Gift of Life: Why it’s so Important to be an Organ Donor

Three years ago our family was blessed with the type of friendship that comes once in a lifetime. You know what I’m talking about; friends that you instantly click with and feel like you’ve known forever because they are just that special. Our friendship began over dinner at a popular Buckhead restaurant where we sat for hours chatting and sharing stories until we were closing down the place. As my new friend, Madelyn opened up to me, I realized not only was she amazing, but so are her two incredible daughters.  One of which, a 4-year-old named Mya, is a complete rock star. Mya has been through a journey in her four short years of life that most people will never encounter in their lifetime. 

Imagine, taking a trip to Disney World, the happiest place on Earth, only to realize that life would be changed forever. Shortly into their vacation, Mya just 15 months, developed a cough that became so concerning that her parents decided it was time to take her to the local ER. After multiple tests, they realized that her heart was the size of a nine-year-old’s. She was quickly placed in a sedated coma to allow her heart to rest. Her heart was unable to pump on a regular cycle and doctors were concerned about her lungs being able to sustain the pressure.  Soon after, she was placed on the heart transplant list.  After months in and out of the hospital, she was ultimately admitted into Children’s Healthcare of Atlanta on her third birthday, March 2nd, where she would stay and wait patiently and strongly for her miracle. On September 2nd, Mya’s parents received the call that her donation had arrived. 

mya lead pic

It was a complete roller coaster of emotions. Madelyn describes the moments  after receiving the call that her daughter’s ultimate gift of life had arrived as “hitting her hard.” After all, another family suffered a complete tragedy with the loss of their baby, but they looked beyond themselves and their tragedy and thought of another baby and family they had never met and gave her life. Wow! 

Mya’s surgery was a success and for almost four years she has been living a very strong, healthy, normal life.  She attends public school and gymnastics. She loves to swim and travel with her family.  Her body is happy with her new heart and her medications work wonderfully.

Mya gym 2

Here’s the part of the story that many will be shocked by. I know I was. This healthy new heart that sweet Mya received will not last forever.  A heart transplant is more a bridge that allows the recipient to live until the next transplant. The reason for this is, the body, over time, recognizes the heart is “foreign” and will start to reject the transplant. Mya will more than likely need up to four transplants in her lifetime.  That is until science and research change this. 

As a family, they wondered what they could do.  How could they help in such a helpless situation?  So, they started a foundation with the mission to enhance lives by funding research to increase the longevity of transplants called, Enduring Hearts.  This foundation helps spread the word that one in four children who receive a transplant will need another within the first five years.  Enduring Hearts works closely with Children’s Healthcare of Atlanta and many other organizations to ensure that these hearts last 10-15-20+ years with the hope that one day, only one transplant will be necessary.

                                                                                                  EH logo

There are a few ways to make a difference. The number one way is to get listed as an organ donor and donate life!  Right now there are 4,157 candidates waiting for a heart and 134 of these need repeat transplants.  Enduring Hearts offers both local (Atlanta) and national events which include the Rock Around the Clock 5K and Achy Breaky 5K on August 27th (register here),  celebrity golf tournament, Georgia Gives Day (HUGE success last year) and their most popular event: an auction of fine and rare bourbons.  These events help spread the word as well as raise funds for research that change the face of the organ donation world.  Because of foundations like Enduring Hearts, Mya, and thousands of children and adults may never have to put their name back on that transplant list.  Register, educate and share!

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3 Responses to The Ultimate Gift of Life: Why it’s so Important to be an Organ Donor

  1. Jennifer
    Jennifer August 4, 2016 at 8:55 am #

    I had NO IDEA that the transplant doesn’t last… thank you for sharing this important information. I have been an organ donor for years, but now I have a new understanding about how truly vital this is.

  2. Alison Paul
    Alison Paul August 5, 2016 at 3:51 pm #

    Rooting for Mya and all the kids like her!

  3. Annie
    Annie August 19, 2016 at 9:55 am #

    WOW. This gives me a totally new perspective on what organ donation can mean. Thanks for sharing Mya’s story!