Last weekend, I completed the shortest triathlon race I have ever done—a sprint event at the NJ State Triathlon. It was a race that only took one and a half hours to complete, covering the distance of a 500-meter swim, a 20km bike ride, and a 5km run, which is less than 1/8 of an Ironman. Despite its brevity, this race holds the proudest moment of all the races I have ever done because I completed it side-by-side with my 17-year-old son, Evan. Many teenagers participated in the race, as such a distance could be easily traversed by an energetic boy with a bit of training. However, for Evan, this was his very first athletic race in his life. In fact, it was the race of a lifetime for him, a celebration of the miracle of life itself. Seventeen years ago, a mere one and a half hours could have separated him from this world and all the people who love him. Evan was born with severe birth trauma at Princeton Medical Center in July 2006, two years after I started my faculty position as a molecular cancer biologist at Princeton University. At that time, we were anxiously awaiting the arrival of our baby boy at the end of a full-term pregnancy. However, the joyful anticipation turned into a nightmare one evening when I returned from the lab near midnight. My wife informed me that the baby was not moving at the expected regular hour at night, and she was getting worried. We decided to go to the hospital to make sure nothing was wrong. The doctor noticed poor fetal heart rate variability and signs of fetal distress (meconium-stained amniotic fluid). This prompted the doctor to rush my wife into the surgery room for an emergency cesarean section. When Evan was born, he was extremely pale, with a poor APGAR (newborn vitality index) score of 6 at 1 minute and 9 at 5 minutes. He stopped breathing shortly after birth and was immediately sent to the neonatal critical care unit and put on a ventilator for half an hour, followed by nasal oxygen for the next 3 days. Evan was diagnosed with anemia, with less than 20% of a normal infant hemoglobin level, which explained why he looked pale. He needed three blood and platelet transfusions to stabilize his condition. Additionally, he was determined to have cardiomyopathy, which resulted in an enlarged heart. Initially, the doctor suspected a congenital heart defect, but later they discovered that all these conditions were a result of a rare condition called "fetal-maternal hemorrhage," which caused the fetal blood to drain back to the mother. In more than half of such cases, this condition leads to the stillbirth of the baby. The doctor told us how fortunate it was that my wife insisted on coming to the hospital that night, as Evan would not have survived if we had waited for two more hours. <div>After spending two weeks in neonatal intensive care, Evan was discharged from the hospital after his condition stabilized and improved. His heart returned to normal, and though he still looked pale, his blood count had reached the normal range. We came home with the hope that we had dodged a bullet, but little did we know that oxygen deprivation had caused some long-lasting damage for Evan. By the time Evan turned 9 months old, we noticed that he was not reaching some key developmental milestones that his healthy older sister achieved easily at the same age. He couldn't prop himself up from his belly, couldn't roll over or crawl, and couldn't sit stable even with assistance. He also had difficulty tracking objects consistently or grabbing onto toys. He frequently arched his back, and his eyes rolled back randomly. Despite having a normal birth weight, he consistently ranked in the 5-10 percentile in height and weight due to his feeding difficulties. An evaluation by the New Jersey State Early Intervention Program determined that he had global developmental delays, especially in self-help, social-emotional communication, gross and fine motor skills, and cognition. At 9 months old, Evan had the gross and fine motor skills of a 2-4-month-old baby. The child study team was concerned about static encephalopathy (i.e., cerebral palsy) caused by oxygen deprivation at birth and suggested immediate implementation of early intervention therapies. Further neurodevelopmental evaluation and neuroimaging by Children's Hospital of Philadelphia confirmed the cerebral palsy (CP) diagnosis. Evan's difficult journey to recover from this severe birth trauma had just begun. For us, parenting Evan required a whole new level of commitment, patience, and a growth mindset.</div> <p class="ql-block">(Pat provided occupational and vision therapy to Evan.)</p> When Evan turned 10 months old, he started receiving weekly physical therapy, occupational therapy, and vision therapy at home provided by NJ State's Early Intervention Program. Targeted play practices were aimed at improving his gross and fine motor skills, hand-eye coordination, and social interactions. His decreased muscle tone in his trunk made it difficult for him to roll over, crawl, or sit up. To help him sit up and play with toys, he was placed in a laundry basket and propped up with rolled towels around him. To address his toe-walking tendency, caused by the increased muscle tone in his extremities, he received physical therapies until his teenage years to soften his tight Achilles tendons. He also wore ankle-foot orthosis (AFO) braces during the day and supramalleolar orthoses (SMO) braces during sleep on his right foot to help guide his gait development until he was 10 years old. He wore specially modified shoes with a 2-cm heel lift on the right foot to correct the uneven length of his two legs and avoid permanent damage to his spine. (I used PVC pipes to build a home gym to help Evan learn to walk.) (Evan wore foot braces to correct walking gait and discourage toe walking.) Hand-eye coordination was especially challenging for Evan because of his deficiency in fine motor skills and his right eye esotropia. Depth perception was particularly weak for him, making it very difficult for him to navigate uneven terrain such as walking on stairs or hiking on unpaved roads. He was patched daily for an extended period of time during childhood to avoid losing vision in his right eye and eventually underwent eye surgery at five years old to cosmetically correct amblyopia (lazy eye) in the right eye. (Eye patching to maintain vision to the weak eye.) Even feeding was a struggle for Evan. He could not hold and drink from a milk bottle and required his mom to feed him spoon by spoon. At 2 years old, he still could not take solid food as he would immediately gag and vomit after trying any food with a new texture. Repeated visits with pediatric gastroenterologists, nutritionists, and allergists ruled out malrotation, anatomical abnormalities, or food allergies, but could not pinpoint the root cause of his feeding problems. Eventually, the issue was miraculously resolved by a stomach flu infection when we were on a family vacation in China. The severe vomiting seemed to desensitize his esophagus and cure his gag reflex to solid food. Although he was able to eat regular food after that, Evan continued to be skinny and short, consistently ranking at around the 10th percentile on the growth chart. (Evan receiving treatment for stomach flu at Beijing Children's Hospital in November, 2008.) By the fall of 2009, three years after Evan's birth, our young family had lived through some of the toughest moments. In November 2007, my wife quit her job and became a full-time mom after we found out that the live-in nanny whom we hired to take care of Evan was ignoring him and spent most of her time chitchatting on the phone while we were at work. In 2008, while I was struggling to publish my first papers and secure federal research grants, my father was critically ill, and I had to rush back to China to help take care of his treatment and recovery. In the darkest moments, when I lamented about all these misfortunes in life and at work, my wife's words lifted my spirit out of misery: "If everything that could go wrong is going wrong now, the future will only become brighter from now on." I started to adopt a more positive attitude toward life, began regular exercise to lose weight and improve my own declining health. By early 2010, things indeed started to look brighter, as I received tenure at Princeton University, stabilizing our family's financial situation. My lab was making significant breakthroughs in cancer research, and Evan's condition had improved sufficiently to start formal education at school. Due to his global developmental delays and multiple physical deficiencies, Evan was enrolled in the special child education program in the public school system since he was 3 years old. In the self-contained class at Johnson Park School, Evan began to develop basic learning skills in a physically safe environment with plenty of individualized attention from special education teachers, along with other children in similar circumstances. After two years of pre-K, Evan was recommended for the special education kindergarten program at Community Park. However, we decided to enroll him at Yinghua International School, a local private bilingual immersion school. The smaller class provided Evan with the opportunities to receive regular education in an integrated classroom with healthy kids, but still with sufficient personal attention from teachers to address his special needs. After completing the third grade, Evan had become fluent in Mandarin, but was lagging behind in English. He also faced a multitude of learning challenges. An evaluation by the state's child study team in May 2015 reported that he was picking up learning material slowly, especially multi-step problems. He might not ask questions if he didn't understand the information. He was easily distracted and fidgety. He needed more time to grasp new math concepts, and handwriting was difficult for him. His overall general cognitive ability was ranked at the "Very Low" range at 8% for his age, including visual spatial ability at 7%, fluid reasoning at 2%, processing speed at 20%, and working memory at 21%. The team noted that his deficiencies in visual motor integration skills, fine motor precision/graphomotor skills, and gross motor coordination affected his ability to function at his optimal level during learning. (Evan's first day going to Johnson Park School pre-K at 3 year old) Yet despite all these gloomy descriptions, this sentence in the report warmed our hearts: "Evan is bright-eyed and inquisitive. He is an empathetic child and was cheerful and smiley throughout the interviews." Despite all the hardships he had endured at such a young age, Evan was the kindest soul you could find in a toddler. I remembered one key take-home message from the book "Welcome to Your Child's Brain," written by my colleague Prof. Sam Wang at Princeton, that half of the brain development occurs after a child is born. There was still so much we could do to make miracles happen for Evan. Instead of wondering what Evan could have been without the birth trauma, we had opportunities to grow with him and enjoy every little achievement he could accomplish. We decided to enroll Evan in the integrated class at Community Park Primary School instead of the academically more challenging Princeton Charter School and have him repeat the third grade. The public school system had more resources to provide Individualized Education Program (IEP) support for special education students like Evan, including in-class support by a dedicated teacher, physical, occupational, and speech therapies, and pull-out classes to strengthen areas of weakness. Repeating the third grade also allowed Evan to catch up in his English language skills. We wanted to give Evan the room to grow at his own pace. Initially, Evan struggled in a bigger classroom; his short attention span and difficulty following multi-step instructions made him lag behind in his learning. Working with his IEP team, we made adjustments to his sitting location in the classroom, developed a checklist for him to follow in his study and daily routines, and hired a tutor to provide academic support patiently. To Evan's credit, he had an amazing ability to build rapport with adults and was always the favorite student of his teachers due to his hardworking attitude and pleasant personality. He gradually but persistently improved in his academic performance. Contrary to our concern that he may struggle mightily with the increased workload and complexity of high school learning and might not be able to graduate high school, he flourished in the first two years of high school, receiving nearly perfect grades in all courses and is now ready to take on the challenge of tackling AP courses in his junior year. He also weaned himself off from tutoring support and has been taking care of his study completely independently in high school. Much of Evan's tremendous growth came from his participation in sports. With limited mobility and a tendency to fall, Evan was not able to participate in competitive team sports such as soccer and basketball at a young age. But he fell in love with basketball after I introduced him to the sport at home. Despite his deficiency in depth perception, he became a sharpshooter after spending countless hours in the patio basketball court that we built specially for him during our house expansion project. He surprised his friends by scoring several 3-pointers in a row when left unguarded in pickup games. He became a huge fan of Duke Basketball (I am a Duke alum), and an autographed poster from Coach K gave him the motivation to "Always try Your Best!" (We built a lighted and nearly enclosed basketball court during our home extension project for Evan to practice basketball safely and even during dark winters.) <p class="ql-block">In 2018, I completed my first triathlon in the New Jersey State Triathlon, with Evan and his siblings cheering and witnessing the magic of multisports. At that time, Evan could barely swim a few yards, as his weak core muscles made him swim like he was almost drowning, and he had not yet learned how to bike. But I could see the spark in his eyes, and I knew he wanted to become a triathlete like his dad one day. In 2020, when the pandemic hit, and everything was shut down, I took it as a golden opportunity to start training for an Ironman, taught Evan and his little brother James to bike, and trained his older sister Michelle to run long distances. I completed Ironman Arizona in 2021, qualified for the Boston Marathon in 2022, and finished the six Abbott World Majors in 2023. In all these races, I ran the last mile for Evan, because he was my hero who gave me the strength to push through all that pain and suffering to reach the finish line. However, all of these paled in comparison to the tremendous joy I experienced while racing the Sprint Triathlon with Evan.</p> <p class="ql-block">When I suggested to Evan that he could sign up for a triathlon race this summer, I knew he would be ready for the challenge. After three years of persistent strength training with a college student coach, Jonathan, Evan had improved his core strength and built up significant amount of muscles, which benefited his swimming, biking, and running forms. What he needed now was experience in open water swimming and getting used to the "brick run" after cycling. He diligently practiced brick runs nearly every day and went for open water swims with our neighbor, fellow triathlete Dr. Ai, in Lake Stockwell in south Jersey (I am allergic to the water in that lake). As the race day drew close, Evan became very nervous. After all, this would be his very first sports race in his life, and he could barely eat any food the night before the race. I had a talk with him to calm his nerves. I told him that it was normal to be nervous before his first triathlon race— even I had diarrhea all day before my first race. "But look at how far you have come from your early childhood when you were not even expected to walk normally. This will be a victory lap for you, just take it as a long training day."</p> Evan had a big supporting cast during the race, with his friends, family, and our tri club members cheering him on throughout the race. As a para-triathlete, Evan also had my support as his guide to follow him throughout the race and ensure his safety. When the race began, Evan dived into the water and began his determined strokes toward the next swim buoy. I didn't know what was running through Evan's mind, but I remembered a motivational quote I read during my Ironman training: "When you are in a triathlon, remember how well you trained for it. Remember how wonderful each stroke, pedal, and step are, and keep thinking about those that supported you along the way." It was a long way for Evan to even get to the starting line of a triathlon, but he was now living the biggest dream of his life. The race went as smoothly as it possibly could, except that Evan forgot to put down his bike helmet until he was reminded by volunteers at the run-out exit. His pace was faster than his usual practice pace, but adrenaline was running high with his fans cheering him loudly along the way. Evan sprinted across the finish line but immediately stopped and vomited. He had eaten banana cake for breakfast on race morning with too many nuts and drank too much water during the run. It was a little lesson to learn and experience for his next race. For a teenager who cheated death by two hours at birth, was partially handicapped by cerebral palsy-related complications, and did not know how to swim or bike just two years ago, Evan exceeded all expectations in his first triathlon race. He won first place in the para-triathlete division and was the only Asian American member of the Princeton High School Tri Club that won the high school team championship. Against overwhelming odds, he triumphed by never giving up trying and believing that, in life, "Anything is Possible!"