COTA for Manny

Our Story

“Now may our Lord Jesus Christ…who loved us and gave us eternal comfort and good hope through grace, comfort your hearts and establish them in every good work and word.” 2 Thessalonians 2:16-17

Short on time? Read the underlines!

At 17 years young, Manny is well aware he has escaped death at least five times – God has an amazing purpose for him yet unfolding! (Check out Psalm 68:20 and Job 42:2.) Manny’s fight for life began in 2008 when at six weeks old, he turned blue and went limp in my arms. In the haze of shock, I heard my mother who was visiting at the time frantically shout, “Call 911!” Within minutes, Manny was rushed via ambulance to Children’s Hospital of Oakland where doctors finally discovered an 8-millimeter hole in his heart. During the next 25 days, he was diagnosed with AET (atrial ectopic tachycardia, causing an extremely high heart rate) and weighing only about six pounds, had open-heart surgery. After this successful repair job, in order to keep his heart rate under control, he remained on “the cardiac cocktail,” a blend of highly potent yet toxic medications that cardiologists knew he could not last too many years on as they inevitably damage other organs. So in 2015, when he was nearly eight years old, Manny had a catheter ablation at Stanford to fix the arrhythmia. We celebrated him finally being completely off those lethal meds, and he began running with an awesome cross-country homeschool team, praise God! 

Moving to North Carolina, Manny continued to excel in both academics and cross country, winning his Classical Conversations 7^th grade Science Fair and placing at the top of his age group in two different 5k races within 6 months! Little did we know that only five years after getting off all his heart medications, Manny would need many of these same meds all over again when after experiencing repeated episodes of severe nausea and vomiting, a routine doctor’s visit led to the suspicion that something MUCH more serious was occurring. We had already suspected what Manny was battling was not viral because we live in close quarters with one another as a family and none of us contracted ANY of his symptoms. Indeed, via an echocardiogram, Manny’s pediatric cardiologist discovered his ejection fraction rate was only 10%. Ejection fraction refers to the percentage of blood the left ventricle pumps out in each heartbeat. A normal person’s ejection fraction is 55-70%. At 10%, Manny’s heart was unable to pump sufficient blood to his GI tract so in response, his digestive system was desperately trying to save itself by rejecting everything that came its way, yikes! Manny’s situation was critical.

On July 8^th, 2021, Manny was rushed by ambulance (for the fourth time in his life) to Duke University Hospital where for the next 37 days, the amazing PCICU (Pediatric Cardiac Intensive Care Unit) team conducted every test imaginable to discover what was causing his heart to function so poorly and why his heart rate was skyrocketing yet again. There were at least two occasions they didn’t think he would make it and my husband and I tearfully feared the worst. But each time, by the grace of God and the prayers of so many around the world who have been lifting Manny up to the Great Physician, Manny has miraculously not only survived but thrived under tremendous physical, mental, and emotional duress.

Indeed, Manny has since endured many painful procedures, including a seven hour heart catheterization under sedation, a Swann neck catheter, and other immobilizing lines and dressings that causes his extremely sensitive skin to break out in agonizingly itchy rashes he can never scratch, along with his first several days in the PCICU being unable to eat nor swallow even a single drop of water. Yet Manny has remained ever-cheerful, ever-hopeful, ever thankful to God and all those who have cared for him. He has become the model patient of the PCICU, frequently praying for the nurses and staff, encouraging the other recovering children on the floor with an enthusiastic, “Keep walking, you can do it!” and even considering new ways to improve the patient and parent experience at Duke. 

On August 13^th, 2021, Manny was discharged from Duke to finally come home on oral therapy (being able to take his medications by mouth and without the need for direct lines to his heart). He was also fitted for a Zoll Life Vest, a 24/7 wearable defibrillator in the event he experiences SCD (Sudden Cardiac Death). Meanwhile, our insurance refuses to authorize approval of the primary heart medication that is helping keep Manny alive. (They don’t seem to understand why a 13-year old needs medication meant for a 70 or 80-year old!) Due to the severity of his chronic heart failure, doctors have recommended and Manny agrees that he needs a new heart, so he is now on the heart transplant wait list. 

Many have asked, “How soon will Manny need a new heart?” Only God knows!  It could be 2 weeks, 2 months, or 2 years depending how long his heart holds up on oral therapy. Until then, Manny will continue to receive follow up care in the form of regular echocardiograms, blood work, and other appointments at Duke to monitor how his heart is managing.  Back in Apex, Manny is learning to listen well to his body so that as symptoms occur, he can record and send valuable cardiac data back to the team for analysis, and he knows the importance of resting when he has gone beyond his physical limits. With Manny’s current status of “2” (1A and 1B are a higher priority on the transplant waitlist), as he moves up the list, we must stick around close to home because in the event a heart is found that would be a potential match, we have 30 minutes to get him to Duke for this life-changing procedure! Would you prayerfully consider partnering with us in paving the way for that precious donor heart to be transplanted in God’s perfect timing?  

During Manny’s 37-day hospital stay, God’s promise in Isaiah 40:29-31 has become more real than ever, “He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.”  No matter how many times Manny has escaped death or how much he makes the best of his time in the hospital, he knows that the most glorious place any person can spend is an eternity in heaven. In the meantime, Manny desires to live each day on this earth fully by the grace of God, who gifts EVERYONE who calls upon the name of the Lord by faith a new spiritual heart through Jesus Christ. God’s only begotten Son’s death on the cross, burial, and resurrection, proved Christ alone conquered death that we might have the abundant life! God bless you for supporting us in this race for life!

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.