Our son Milosh was born with a rare genetic disorder called Barth Syndrome, a metabolic condition that causes cardiomyopathy, neutropenia, muscle weakness, and delayed growth. Though Milosh suffered from heart failure at birth and was added to the heart transplant list, within a couple of months his heart function improved enough to move him to inactive status on the list. We came home and spent five wonderful months enjoying life. When Milosh’s heart started failing again, he was reactivated on the transplant list and put on the Berlin Heart, a mechanical pump that takes over the function of the damaged heart, and a mechanical lung bypass. We had just made arrangements to come to an awareness event at LifeCenter’s office when, after 103 agonizing days of waiting, we received the call. On our way to the hospital, we stopped by LifeCenter in order to film our journey and Milosh’s story from the Green Chair.
Our hearts filled with joy and hope for Milosh and, at the same time, immense gratitude and respect for our donor family. Knowing that they had the courage to look past their grief and find the strength to say “yes” to donation is so incredibly profound that we are forever changed. Thanks to the donor family and the amazing staff at Cincinnati Children’s Hospital, Milosh is now at home enjoying life with his mother, father, sister, and dog. Donation not only saved Milosh; it saved our entire family. Be a hero, and register to become an organ and tissue donor. You never know whose life you might save.
– Ned and Brie Kalapasev, parents of Milosh Kalapasev, Heart Transplant Recipient