The first week of August is designated as National Minority Donor Awareness Week, which is a seven-day period that one Cary, North Carolina, family will be celebrating with joy and gratitude. If a suitable heart donor had not become available, it is possible their son would not be marching with the band, playing trombone, listening to music and watching movies … just like other teenagers will be doing this month.
On September 11, 1995, Lucas Thomas Santos was born with a congenital heart disease called Ebstein Anomaly. First-time parents, Larry and Simone, brought him home 15 days after he was born, and doctors were able to keep his condition under control with just one medication. For more than a decade, Larry and Simone were able to pretend there was nothing seriously wrong with their active boy who played basketball, baseball and loved to swim. The Ebstein Anomaly rarely made its presence known during those early years.
But when Lucas turned 13, his heart started working overtime and began enlarging. Doctors determined that Lucas would need to undergo heart surgery for him to survive. On March 30, 2009, after six hours of open heart surgery, Larry and Simone were told the surgeons had reconstructed his heart valve, opened a shunt and implanted a pacemaker. Beating all odds, Lucas was discharged two weeks later and he began his freshman year at Cary High School as a trombonist in the school’s marching band. For the next two years, he was a ‘normal’ high school student who was busy with his classes, his music and his friends.
On September 25, 2012, all of that changed when Lucas was rushed to the emergency room at Duke University Medical Center with severe chest pains. Once he was stabilized, the medical team determined that Lucas would not leave the hospital until he received a new heart. Larry, Simone and Lucas’ sister, Mikayla, were not anticipating this news; however, they trusted that God was in control. Within days of Lucas being placed on life-saving drugs, a social worker at Duke told the family about the Children’s Organ Transplant Association (COTA). According to Simone, “The support from friends and our church family was amazing and a COTA campaign in honor of Lucas was launched.”
“With its well-equipped staff and our group of wonderful local volunteers, COTA made it possible for us to focus on our son’s health during a very stressful time. Even though we were facing financial challenges, COTA was able to provide a level of support for our family that helped diminish the financial demands … and that gave us hope,” Simone explained.
On November 4, 2012 (40 days after being admitted), the Santos family got ‘the call’ that a new heart was on its way. Lucas was wheeled away for the transplant and the family waited to hear the outcome. There were some hurdles for the transplant team due to the significant scarring of Lucas’s old heart and a significant loss of blood. But Lucas recovered quickly with his new heart, and 11 days after being transplanted, Lucas was sent home.
According to Simone, “Lucas is a miracle. For 16 years he bravely battled congenital heart disease without letting it compromise his life journey. His new heart … the greatest gift … has given him new life, new opportunities and an amazing energy level that he has never had before. We are very thankful that our donor family’s choice gave Lucas a second chance at life.”
Larry and Simone will be forever grateful to the donor family who made the decision to donate their loved one’s heart while struggling through their grief. Larry and Simone are hopeful that when people hear their story, they will take the time and the necessary steps to register to become a designated organ donor.
Due to the selfless gift of his new heart, Lucas has returned to doing everything he loves to do. Lucas has many life goals, but he hopes to pursue a degree in mechanical engineering and to have fun playing his music.
There is absolutely no stopping Lucas Santos now.
For more information about the Children’s Organ Transplant Association, or to find a COTA family in your area, please email gro.a1524158297toc@m1524158297ik1524158297.