Emery Funkhouser was born July 30, 2008 with HLHS. We had received the diagnosis when I was about 23 weeks pregnant and knew we would be facing multiple open heart surgeries and possibly a heart transplant. Emery endured 2 of the 3 staged open heart surgeries for HLHS but her right ventricle was not functioning well and she was assessed for transplant. At 19 months of age she was put on the transplant waiting list. We were lucky to have her at home with us and expected to be waiting for several months for a heart. We were shocked to receive a call the next morning after she was listed stating they had a heart. Emery's donor heart was not a perfect match and she experienced rejection upon receiving the heart. She was treated in CICU for 3 weeks to strip her body of as many antibodies as possible and stop the rejection. During her three week battle she was very sick and the treatment she received was very new. She was able to go home after a month. The year following transplant was the hardest, trying to manage her anti-rejection medication and the serious side effects they cause created a lot of stress. Once we were able to taper her anti-rejection meds back she began to thrive and we haven't looked back since. She has had her heart for three years and is about to turn 5. We are so thankful to the donor family and to the medical advances that Egleston chose to employ in order to save her life.
Mya was 15 months old and on a family vacation to Disney World when she went into heart failure. Up until then, she had been considered a "healthy" child. Mya was admitted to a hospital in Orlando, FL, where she was diagnosed with dilated cardiomyopathy. After a couple weeks away from family, friends, and her sister Anya, Mya and her parents returned home to Marietta, GA, where she would received follow-up care at Sibley Heart Center.
Mya did well on medication for almost 2 years, until the morning of her 3rd birthday, when she began to exhibit signs of heart failure again. Her parents took her to the hospital, and later that day, March 2, 2012, Mya was placed on the transplant list as status 1A (most urgent). Mya waited in the hospital for her new heart for 6 months! Her hospital room became her home, decorated by all of her artwork and the artwork of her friends and cousins. Her Mommy, Daddy, Grammy, Mom Mom, Grandpap, Pop Pop, aunts, and uncles took turns staying with her so she was never alone, and the nurses became part of her family, too. Thanks to all of this support, as well as her own amazing strength and positive personality, Mya was the strongest, most adapted child. She thrived, and actually enjoyed her stay in the hospital! The only time she ever showed any signs of being ready to leave were when she would say to her Mommy, "The mailman is taking a long time to bring my heart!" for that's how she understood the situation; her old heart was broken, and a new one was coming in the mail.
Finally, on September 2nd, Mya's family got the call from the hospital. They had found her new heart! Only 5 days after her transplant, Mya went home to be with her family again. Now Mya is doing great and enjoys all the things that four-year-olds love, including swimming, gymnastics, her dogs, and her family.
Grace was diagnosed with Dilated Cardiomyopathy (an enlarged heart) at 11 days of age. She compensated well for many years with the help of medications despite a very weak heart, but as time went on, her symptoms worsened. Grace was placed on the list for a heart transplant on January 22nd 2010. On April 4th 2010, Easter , she received the gift of a new heart! She is now 10 years old and doing very well.
Here is Riley. She was diagnosed with cardiomyopathy days after her birth and immediately placed on the transplant list. After 9 weeks of being hospitalized, Riley received the perfect heart for her. She is now 12 years old and doing wonderfully!!