April 1, 2025 — April is celebrated nationwide as Donate Life Month, which was instituted by Donate Life America and its partnering organizations in 2003. It features an entire month of local, regional and national activities to help encourage Americans to register as organ and tissue donors … and to celebrate those who have saved lives through the gift of organ and tissue donation. In addition, the third Sunday each April launches National Volunteer Week (April 20-26, 2025) across the country.
The Lee Family of Apex, North Carolina, truly understands the importance of Donate Life Month as they continue to wait for ‘the call’ letting them know a perfect heart is available for their 17-year-old son. This April, the Lees will also be expressing gratitude for the volunteers and contributors who came together to support COTA and ensure transplant-related expenses would not financially cripple their family.
In January 2008, Emmanuel “Manny” Lee was born in California. He was full term but weighed only 4 pounds and seven ounces. Mom Tracy and Dad Gary were excited to welcome their new family member and introduce him to Big Sister Phoebe and Big Brother Apollos. But just a few weeks after being home as a family of five, Manny had to be rushed to Children’s Hospital of Oakland after suffering cardiac arrest. The doctors there discovered an 8-millimeter hole in his heart. At four weeks old and weighing only six pounds, he had open heart surgery and was diagnosed with persistent atrial tachycardia, a rare arrythmia in children. In 2015 when he was nearly eight years old, Manny underwent a catheter ablation at Lucile Packard Children’s Hospital in Palo Alto, California, in an effort to fix the arrhythmia. After that procedure, he began running cross country, which given how his life started, was a blessing to his parents.
In 2017, the Lee family relocated from California to North Carolina where Manny continued to excel in both academics and cross country. However, he started experiencing repeated episodes of severe nausea and vomiting; a routine doctor’s visit suggested something was seriously wrong. An echocardiogram was performed and showed Manny’s heart function was dangerously low; therefore, his heart was attempting to preserve itself by diverting blood away from the GI tract to more critical systems, thus forcing the digestive system to shut down. Manny’s situation was dire. On July 8, 2021, Manny was rushed by ambulance to Duke University Hospital in Durham, North Carolina. He was quickly admitted to the pediatric intensive care unit. During the resulting thirty-seven day stay, he was diagnosed with Dilated Cardiomyopathy, which in Manny’s case, the left side of his heart thinned (dilated), stretched out and could no longer pump and squeeze effectively on its own. Sometimes with this diagnosis, medications can be used to improve cardiac function and prevent further complications. But at that juncture, Tracy and Gary were told Manny would need a heart transplant, and he was designated as status two. All of this was unexpected news for the Lee family.
“During this stay at Duke we thankfully heard about the Children’s Organ Transplant Association (COTA) from a transplant social worker. We quickly got our paperwork rolling and felt an instant sense of relief,” Tracy said.
The Children’s Organ Transplant Association uniquely understands that parents who care for a child or young adult before, during and after a life-saving transplant have enough to deal with; therefore, COTA’s model shifts the responsibility for fundraising to a team of trained volunteers. COTA is a 501(c)3 charity so all contributions are tax deductible to the fullest extent of the law, and funds are available for a lifetime of transplant-related expenses. On August 18, 2021, Tracy and Gary completed and sent their signed agreement to COTA’s headquarters … the Lee family officially became part of the COTA Family, and Manny became a COTA Teen.
“The COTA for Manny website was quickly launched and donations started rolling in. COTA’s President Rick Lofgren called to welcome us to the COTA Family and to tell us the COTA for Manny campaign is one of the fastest funded and most successful efforts he has seen in his tenure,” Tracy said. “We were deeply touched by the outpouring of prayers and encouragement from our generous and super caring family and friends.” In a very short amount of time, community volunteers raised $104,700.
At the end of August, Manny was discharged from Duke and outfitted with a Zoll cardiac life vest so he could begin his 8th grade year. Although he had to quit running due to his condition, Manny managed to enjoy Hapkido martial arts despite the physical discomfort and limitations associated with this cardiac equipment. In 2022, Manny underwent a transplant re-evaluation and stepped into 9th grade, excelling in all his academic endeavors.
In July 2023, Manny elected to undergo surgery to have an Internal Cardiac Defibrillator (ICD) implanted as a way to hopefully rescue him from possible Sudden Cardiac Death and also ease some of the lifestyle interruption associated with his Zoll life vest. Manny recovered well with minimal complications. He returned to school, remained a straight-A student and enrolled in Calculus 1 and 2 as a high school sophomore at the local community college in addition to his other coursework. While he then had to drop Hapkido as a contact sport which threatened to dislodge his ICD, he quickly took up both English Country Dancing and pickleball. The family was thrilled when he was able to pass all necessary tests to get his driver’s license. Manny continues to be an inspiration to all who hear his story.
“At this stage of Manny’s transplant journey, his chronic heart failure is mostly stabilized with medications and regular heart monitoring which means he does not currently need to be on the ‘critical’ waiting list for a new heart, but we know that is coming,” Tracy explained.
She also pointed out that they were introduced to COTA (which they had previously never heard about) when Manny was transported to Duke in critical condition and they were simply in shock after hearing he needed a heart transplant. She remembers Gary and herself going through the arduous process of transplant paperwork and signatures of approval … and then being told to expect Manny’s heart transplant would cost over a million dollars. Tracy remembers, “You could have heard a pin drop, it got that still. Gary’s mind instantly went to a popular crowdfunding website. But the transplant social worker mentioned that unlike other well-meaning organizations, COTA’s commitment is that 100% of funds raised in honor of patients are used for transplant-related expenses.”
“Those words were like a new ray of bright hope suddenly shining in what seemed to both of us as a financial pit of darkness,” she said.
Tracy continued, “Knowing COTA has been there with us, and will continue to travel this journey with us, gives us peace of mind. We will never forget COTA’s President, Rick Lofgren, personally calling us and welcoming us to the COTA Family. That was followed by the amiable assistance we received from the COTA staff in setting up the fundraising effort and a dedicated website. The COTA staff has helped us every step of the way; they are incredible people who are wholly invested in each and every COTA family. Our respect and trust for what COTA does, not just for our family but for thousands of other transplant families, has made all of the difference and has let us know we are not alone.”
At this point in Manny’s transplant journey, Tracy says they regularly get questions about when he will need a new heart. The answer is dependent on how his heart continues to respond to oral therapy. In the meantime, Manny receives regular echocardiograms, has blood work and goes to appointments with Duke’s cardiology team to monitor his heart. All of these are transplant-related expenses for which COTA funds can be used. Manny is learning to listen to his body so that as symptoms occur, he can record and send valuable cardiac data back to his medical team for analysis.
This April, Manny will be doing all of the things he loves including hanging out with friends, pursuing academic excellence, playing board games, writing encouraging notes, attending local dances, and relaxing in his ‘Manny Cave’ that was built with love by Make-A-Wish Eastern North Carolina. Max the Monkey, his treasured stuffed animal companion, will always be by his side. Manny’s current collegiate ambition is to complete a degree in mechanical or biomedical engineering so that he can earn a living to provide for a family, homeschool his kids, and develop technologies that help others with heart conditions. He envisions a future where people are spiritually uplifted and cardiac patients like him are technologically and exceptionally equipped!
Nationwide, April is the month that is dedicated to raising awareness about the need for registered organ and tissue donors. Many COTA families are waiting for life-saving transplants like the Lee Family. You can visit www.RegisterMe.org to indicate your wish to be a life-saving donor. Every day 17 people die waiting for an organ transplant here in the United States. One organ donor can save eight lives and enhance more than 75 others. Another person is added to the nation’s organ transplant waiting list every eight minutes.
