Skip to content

Minjae Lee

Minjae Lee (Korean: 민재; born October 1, 2015), usually called Jae or Min-ah, was a Korean-Chinese pianist from Tianjin who later lived in Baltimore. He was approximately five feet one inch tall and weighed around ninety pounds, with a very thin build, warm light-golden skin, a round face, expressive dark-brown eyes, and thick, silky, straight black hair. His soft, breathy, youthful-sounding voice and limited speech did not reflect the full extent of his receptive language or musical understanding; he communicated through short spoken combinations, AAC, gesture, facial expression, signs, and nonword vocalization.

Minjae trained through Tianjin Juilliard Pre-College and won the senior piano division at the Rome International Piano Competition at seventeen. The severe health decline that followed Rome contributed to his family’s early-2034 relocation from Tianjin to Baltimore. He retained flexible piano and recording capacity after the move, and Jacob Keller later produced his ten-track debut album, ‘’Still Here’‘, released in January 2036.

Minjae had spastic cerebral palsy, autism, POTS, Lennox-Gastaut syndrome, gastroparesis, migraine, anxiety, moderate global developmental delay, and severe disabling chronic fatigue without a separate ME/CFS diagnosis. He primarily used a customized manual wheelchair with power-assist, later added tilt-in-space support, and required substantial medical and daily-living assistance. He was also stubborn, emotionally sensitive, highly trusting, frequently funny, and capable of making meaningful choices about his relationships, work, rest, and care. His childhood friendship with Minh Tran became a teenage romance and, in early fall 2036, a marriage.

Early Life and Family

Minjae grew up in Tianjin with his parents, Nari and Joon-Ho Lee, and his older sister, Minseo. Both parents were Korean-Chinese, and the household used Korean and Mandarin. His cerebral palsy was evident from birth. Autism, epilepsy, POTS, gastroparesis, and other parts of his medical picture were recognized over time, requiring early therapy, specialist care, seizure observation, mobility support, and extensive family adaptation.

Nari, Joon-Ho, and Minseo learned Minjae’s expressions, gestures, sounds, muscle tension, and changes in breathing as a practical communication system. They could often identify pain, fatigue, fear, overload, and seizure warning signs before an unfamiliar person recognized that anything had changed. When Minjae was severely fatigued or postictal, even his usual facial and gestural signals could become faint; his family then relied on small changes from his baseline rather than assuming silence meant comfort or consent.

Minjae knew Minh from early childhood because their mothers, Nari and Mei Tran, were close friends. The children grew up through family gatherings and shared routines before attending Tianjin Juilliard’s Pre-College program together. Minh’s familiarity with Minjae preceded any romantic relationship and contributed to the ease with which she understood his speech, stutter, gestures, and changing access needs.

The Lee family researched treatment beyond China as Minjae’s conditions became more difficult to manage. The post-Rome health crisis made the limits of his existing care especially clear. During late 2033, the family navigated the approvals and preparation required for an international transfer; they physically relocated to Baltimore in early 2034. The move separated them from extended family, familiar clinicians, established routines, and the cultural environment they had known. It also required them to rebuild medical, educational, financial, and community support in a country where Minjae initially knew only a few English words.

Education and Musical Formation

In Tianjin, Minjae attended a weekday school for students with complex disabilities. Its staff were familiar with his medical needs and communication differences, although he remained vulnerable to bullying and deception from peers who exploited his trust and cognitive delays. Severe fatigue sometimes caused him to fall asleep at school even when he was engaged with the material. Rest in those circumstances was a medical need, not lack of interest or effort.

His general education remained separate from his Saturday training at Tianjin Juilliard Pre-College. The music program provided rigorous classical instruction, theory, rehearsal, and performance experience. Minjae balanced it with weekday school, therapy, appointments, seizures, and unpredictable energy. His family adjusted practice and travel around his health rather than treating a fixed schedule as proof of commitment.

Piano was Minjae’s principal instrument. He had perfect pitch, intense musical talent, strong auditory-pattern recognition, and a deliberately uneven or “spiky” cognitive profile: musical and receptive-language abilities could be far stronger than his speech, working memory, adaptive functioning, or performance under overload suggested. Music let him communicate emotional structure and nuance that spoken language could not reliably carry. It was also part of his bond with Minh, a cellist who had known his musicianship long before they became partners.

Rome International Piano Competition

Main article: Rome International Piano Competition

Minjae entered the Senior Piano Division of the Rome International Piano Competition, held November 14–20, 2032, at the Auditorium Parco della Musica Ennio Morricone. He traveled from Tianjin with Nari, Joon-Ho, Minseo, and Minh and arrived with a short recovery buffer before the competition began. His program comprised Claude Debussy’s ‘’L’Isle joyeuse’’ and Frédéric Chopin’s ‘’Ballade No. 1 in G minor, Op. 23’‘.

The venue provided accessible routes, assisted transfers, a shortened warm-up, and a lower-stimulation partitioned rehearsal area. When Minh asked how the rehearsal piano felt, Minjae answered, “Good. Like… home.” On the morning of the senior final, his family helped him bathe, dress, groom, eat, and recover from nocturnal seizures so that he could preserve his stamina for the performance.

Minjae completed both works despite hand spasms, severe fatigue, and intermittent warning signs. A pinky spasm produced a few extra notes, but he maintained the program’s continuity and interpretive shape. Jacob, then twenty-five and serving on the judging panel, argued that the deviations did not outweigh the performance’s artistic merit and that Minjae should win on that merit rather than through sympathy or lowered standards.

After the performance, Joon-Ho told him, “You make me proud. Always.” Minjae sobbed from the combined emotional and sensory overload, then fainted after Minh recognized the warning signs and positioned him safely. He slept through much of the interval before the category results. During the winners’ photograph, Jacob recognized an absence seizure and stopped a photographer from repeatedly calling for Minjae’s attention. He waited without touching or crowding him, then said, “There you are,” when Minjae returned to awareness. Elliot Landry suggested moving to a quieter room.

Minjae received First Place in the Piano Senior Division, the Special Award for Outstanding Interpretation of Debussy, and Second Place in the Overall Grand Prize across all instruments and divisions. His performance and results circulated online in China. Before the family left Rome, Jacob gave Minjae his personal email address rather than a professional contact, creating the private line through which their later friendship and mentorship developed.

After the return to Tianjin, Minjae slept through most of the first weekend except for medications. His seizures and fatigue escalated over the following weeks, eventually including a status-epilepticus episode lasting nearly thirty minutes. Atypical puberty and associated mood changes complicated the same period. During a remote review, Logan Weston recognized that Minjae’s childhood drug-resistant epilepsy and developmental history fit Lennox-Gastaut syndrome. Johns Hopkins confirmed the diagnosis after the family’s early-2034 move.

Following his Rome results, Minjae received interview opportunities in classical-music circles. Some prospective interviewers were uncertain about communicating with him.

CRATB helped raise funds for the emergency relocation to the United States following his post-Rome hospitalization.

Recording Career

‘’Still Here’‘

Main article: Still Here - Album

Jacob began producing Minjae’s debut album, ‘’Still Here’‘, in late 2034. The project developed from the artistic connection that began in Rome and from Jacob’s recognition that Minjae’s playing remained musically distinctive even when his body made conventional recording schedules impossible. Production continued through the album’s January 2036 release.

The ten-track album combined Minjae’s original compositions with reimagined classical repertoire. Recording sessions in CRATB’s Baltimore studio were often an hour or less, with soft lighting, quiet between takes, water and food available, accessible space for his wheelchair, AAC within reach, and frequent rest. Jacob stopped sessions when Minjae’s tremor, speech, gaze, or posture showed that he was approaching a crash, regardless of where they were in a take. Minjae decided which performances and compositions belonged on the finished record.

Charlie Rivera, Peter Liu, Riley Mercer, and other members of CRATB contributed to selected tracks without displacing Minjae’s piano as the center of the project. Many sessions ended with Minjae falling asleep. He often stubbornly resisted finishing because he still wanted to work, while his trust in Jacob and CRATB made him feel safe enough to fall asleep in their company. Other sessions captured sustained playing when his body and concentration aligned. The production treated those variations as conditions of the work rather than evidence that he no longer had a career.

That sense of safety also extended to Fifth Bar spaces. Minjae could remain intent on unfinished music even as he became too tired to stay awake among people he trusted.

A special-needs trust was established for Minjae’s royalties so that income from his music would not automatically disrupt medical-benefit eligibility. ‘’Still Here’’ received nearly forty thousand streams during its first week. Its practical importance to Minjae included being paid for his own work and being recognized as a recording artist, not merely as the subject of a charitable project.

Minjae earned money as a musician and contributed financially to his life with Minh as he was able.

Personality and Emotional Life

Minjae was determined, stubborn, warm, deeply empathetic, and highly trusting. He smiled readily at familiar people and strangers and generally assumed that others meant well. That openness made connection easy, but it also made him vulnerable to pranks, bullying, deception, and manipulation. His family helped him identify unsafe behavior without teaching him that trust itself was a mistake.

He was emotionally sensitive and could be hurt sharply by rejection, criticism, or the belief that someone was upset with him. He noticed distress in people he loved and often wanted to comfort them, although worry about another person could overwhelm him. Patient, direct communication helped more than raised voices, euphemism, or a demand that he stop reacting before he understood what had happened.

With people he trusted, Minjae could be sassy and funny. He had strong opinions about music, hated being dragged out of bed, and loved dancing even when his balance, stamina, or motor control limited how he moved. Moderate global developmental delay did not make him ageless or childlike. At nineteen, he was still a nineteen-year-old young man with age-specific humor, desire, frustration, romance, and preferences.

Music remained one of Minjae’s central ways of organizing emotion. He listened to classical pieces associated with people or memories, hummed fragments when speech was inaccessible, and returned to the piano when his body allowed. He trusted people until they gave him a concrete reason not to, and he understood his marriage to Minh as an adult partnership rather than a reward for becoming more independent.

Relationship to His Body

Minjae was demanding and often unyielding about privacy, especially during time alone with Minh. He made it clear when someone had remained in his space too long. His parents had to adjust their longstanding care routines to respect those demands alongside his continuing medical and daily-living needs.

Minjae did not remain cheerful for other people’s comfort. When he was ill, in pain, overtired, or frustrated, he could cry, grumble, become sarcastic, cling physically to a trusted person, or refuse a transition. Charlie called him “crankypants” when he was visibly miserable. During a severe fatigue crash, Minjae could fight a needed nap because sleep meant losing time with people he loved; anger and repeated refusal often expressed frustration with his body rather than confusion about the people helping him.

When overwhelming pain or sensory distress led him to injure himself or hurt someone who approached, Minjae could feel ashamed, cry, or try to apologize afterward. During a physical-therapy session filmed for the documentary, he bit his thumb while his muscles fought the requested movement. When Minh asked whether he was hurt or angry, he answered around his hand, “‘m mad at m’muscles.” The moment made the source of the behavior explicit without reducing him to it.

Minjae retained his identity as a pianist even when illness narrowed the duration and predictability of his playing. On stronger days, his hands could find the keys with accuracy grounded in years of training and musical memory. On difficult days, he used shorter passages, stopped early, listened instead of played, or returned after rest. His capacity was flexible rather than absent.

Minjae enjoyed dancing. Depending on the day, dancing could mean supported standing, moving his upper body from the wheelchair, rocking to the beat, or sharing a slow supported dance with Minh. Motor limitations changed the form of the activity without changing his enjoyment of it.

Minjae enjoyed giving and receiving physical affection with people he loved. He initiated hand-holding, hugs, kisses, and closeness for their own pleasure, including when he did not need reassurance or comfort. When limited reach, positioning, or fatigue required someone to help him move closer, he still expressed whom he wanted to touch and how he wanted to be near them. Affection and annoyance could coexist for him; holding someone’s hand or settling against them did not mean that he agreed with them or had finished arguing.

He loved video calls and FaceTime because they let him see and hear people he cared about, but he preferred being together in person, where he could touch and hug them. Enjoying a call could coexist with frustration that the person remained beyond his reach. Seeing Charlie, Logan, or another loved one on a screen could make him want their physical company more strongly even while he was pleased to talk with them.

Minjae was openly flirtatious with Minh and enjoyed making her blush, including by telling her she was beautiful. He was sensual and took pleasure in physical intimacy. Ezra found his frequent flirting with Minh hilarious.

Minjae valued connection and interdependence. He wanted support that left room for refusal, preference, and meaningful choice, and he pushed back when people treated his need for care as permission to decide everything for him. He could choose the people he loved, the music he wanted to make, whether he needed rest, what he wanted to wear or eat, and whether he consented to participation or filming, even when he needed help understanding logistics or expressing the answer.

He feared abandonment and being experienced as a burden. At times, he tried to be “easy” or delayed reporting discomfort because he worried that his needs would exhaust the people around him. He also feared medical procedures, hospital stays, and being misunderstood when speech failed. His family and Minh repeatedly emphasized that care was not evidence that he had failed and that communication requiring time or assistance still belonged to him.

Minjae noticed that his body developed differently from other boys’ bodies and wanted the changes they experienced. He shared those feelings with Minh during his delayed puberty. His later difficulties maintaining an erection and ejaculating caused embarrassment and humiliation, reinforcing his fear that he was less of a man. He did not want to discuss those difficulties or the shame he attached to them.

Joon-Ho’s concerns about whether Minjae could provide for Minh, protect a household, or manage the demands of a child intensified that fear. Minjae understood husbandhood through adult choice and mutual care rather than physical independence. He could need substantial support while still protecting Minh’s quiet, education, sensory access, separate ambitions, and right to refuse.

Minjae accepted fertility assistance when he and Minh wanted a child while remaining reluctant to talk about its emotional impact. His attraction to Minh, flirtatiousness, and enjoyment of physical intimacy continued alongside the difficulties.

Cultural Identity and Language

Minjae was Chaoxianzu: ethnically Korean and raised in China. Korean and Mandarin were the principal languages of his childhood home, education, and early relationships. He received and inhabited that heritage through his body, language, food, names, music, and relationships. Familiar juk and zhōu, the sound of “Min-ah,” and care offered in Korean or Mandarin carried the safety and recognition of home. Belonging was primarily something he lived, rather than something he explained through abstract cultural analysis. He did not fully understand every cultural expectation or the complexity of the changes his family negotiated, but that did not diminish his understanding of familiar language, his own preferences, or his right to make decisions.

“Min-ah” was an affectionate family form of his name and one he sometimes used for himself. He delivered his wedding vows in Mandarin. Korean supplied the kinship word hyung, which he used for seven chosen older-sibling relationships: Logan, Charlie, Jacob, Peter, Ezra, Elliot, and Riley. For Minjae, the word carried the recognition of an older person he loved and trusted as family; it named a bond he felt, rather than merely sorting people by age. His use of the traditionally male term for nonbinary Riley belonged to their specific established relationship; it was not a general redefinition of hyung for people of every gender.

Nari and Joon-Ho brought their own Korean-Chinese practices of family devotion and collective care into dialogue with the American disability-autonomy perspectives they encountered. They worked toward an approach that preserved close family care while protecting Minjae’s right to choose, refuse, and have preferences that mattered. He did not have to understand every part of that cultural synthesis to experience its meaning: his family loved him, fought for his right to live fully, and maintained food, language, and routines that felt like home after crossing an ocean for his care.

The move to Baltimore changed the language environment around him. Minjae arrived knowing only a few English words and learned the language gradually. He later became fluent, although Korean, Mandarin, or AAC remained easier when he was exhausted, in pain, postictal, anxious, or struggling to access speech. Fluency did not eliminate his stutter, motor-speech limitations, or preference for shorter spoken combinations.

Communication

Minjae usually spoke Korean with his family and Mandarin with Minh. During his early Baltimore years, including 2035, his English remained limited compared with Minh’s, Minseo’s, and his parents’. English-language medical conversations added comprehension demands distinct from his cognitive and motor-speech disabilities; AAC alone did not remove the language barrier.

Minjae called Minh, his partner, “Min” and Minseo, his sister, “Sayo,” distinguishing them in his speech.

In spoken English, Minjae’s R sounds regularly approached a W-like pronunciation, especially at the beginning of words such as “really,” and could carry that quality within words such as “Charlie.” The feature became more noticeable as speaking required greater effort. It softened somewhat as his English developed but did not disappear; it remained distinct from his stutter rather than becoming a uniform substitution in every word. His English S also had an interdental pronunciation.

Minjae’s receptive language was much stronger than unfamiliar people often assumed. He understood full sentences, questions, instructions, emotional tone, and contextual cues, particularly in familiar settings and his principal languages. His speech, global developmental delay, motor control, and response time created an uneven presentation in which comprehension could be hidden behind delayed or minimal output.

Spoken language usually consisted of one- or two-word combinations, with occasional short phrases when he was regulated and had enough energy. Cerebral palsy affected articulation, respiratory support, and initiation. His pronounced stutter intensified with anxiety, fatigue, noise, and social demand; initial consonants could catch repeatedly, making a simple answer physically and emotionally exhausting. His stutter eased somewhat around Minh.

Minjae used an AAC application on an iPad for complex language. With time, a familiar layout, and adequate motor and cognitive energy, he could construct full grammatical sentences. He often chose keyword combinations because they were faster. AAC was not a test of whether he understood something, and speech was not inherently more authentic than language he produced through the device.

Gesture, signs, gaze, facial expression, posture, touch, and nonword vocalization carried much of his everyday communication. Humming could indicate interest, pleasure, regulation, or musical participation; changes in its pitch and intensity could also signal pain or distress. Familiar people waited for his answer and confirmed their interpretation instead of treating a quick guess as permission to speak over him.

Minjae simplified familiar names in speech: “Lo” for Logan, “Cha” or “Cha’lie” for Charlie, “Eh-za” for Ezra, “Jake” for Jacob, and “Ri-ee” for Riley. On AAC, he could use the full names and the compounds ‘’Lo-hyung’‘, ‘’Charlie-hyung’‘, ‘’Jake-hyung’‘, ‘’Pete-hyung’‘, ‘’Ezra-hyung’‘, ‘’Elliot-hyung’‘, and ‘’Riley-hyung’‘. When sleepy, sick, or seeking extra reassurance, the term sometimes softened into ‘’hyungie’‘.

Nari, Joon-Ho, and Minseo acted as communication bridges in medical and educational settings. Minh could read especially small changes because she had known Minjae since childhood, but she still checked rather than assuming. Minseo could distinguish, from his expression and body, whether pain remained manageable, whether he was becoming frightened by a clinician, and whether he wanted her to advocate or allow him more time to answer. CRATB members learned the same principle: communicate with Minjae, not merely about him.

Auditory Processing and Group Settings

Layered or competing sound made spoken communication significantly harder. In restaurants, parties, crowded rooms, or multilingual group conversation, Minjae could catch only fragments and then require extra time to assemble the meaning. Steam, dishes, music, overlapping voices, and movement in a busy restaurant could become one undifferentiated wall of sound.

During a hot-pot meal in Tianjin with Juilliard friends Alex and Mei-Ling, Minjae repeatedly leaned forward to hear, missed the entry points to jokes, and asked for repetition while conversation moved ahead of him. His wheelchair was fitted awkwardly into the narrow table space, and reaching around the pot intensified spasticity in his hand and balance. Earlier wheelchair propulsion over cobblestones had already fatigued his arms. Eating, listening, translating fragments of Mandarin and English, and maintaining an upright position gradually produced tremor and POTS-related wooziness.

When Mei-Ling asked whether he was all right, Minjae answered, “Y-yeah, just—hot,” because the fuller explanation was inaccessible in the moment. His friends slowed down and repeated themselves without treating him as incapable, but the effort required to participate still left him depleted for days afterward. The experience illustrated why kindness alone did not remove an access barrier and why quieter, smaller conversations gave him more room to be present.

Health, Disability, and Access

Delayed Puberty

Minjae’s puberty began late, around seventeen, near the 2032 Rome competition. His doctors had already been evaluating the delay before the trip. He did not receive hormone treatment to initiate puberty. Nari and Joon-Ho did not want to add that intervention to his complicated medical care, and Minseo also opposed it.

By nineteen or twenty, his physical changes remained subtle, including sparse facial hair that was very fine and soft.

Sexual Function and Fertility

Minjae experienced difficulty maintaining an erection and difficulty ejaculating. When he and Minh Tran sought to conceive, Minh underwent intrauterine insemination (IUI) as part of their fertility treatment.

Cerebral Palsy and Mobility

Minjae had spastic cerebral palsy affecting muscle tone, movement, balance, speech, and fine motor control. Spasticity could be painful and unpredictable: a hand might tighten when he needed it open, a leg might resist a transfer, or a reach might require bracing and concentration. Low muscle mass and his very thin build reduced his physical reserve and made ordinary daily tasks more tiring.

He primarily used a customized manual wheelchair with power-assist and later tilt-in-space support. Power-assist let him propel himself while conserving energy. A full five-point postural harness reduced the risk of pitching forward or sideways during drop seizures. When medically stable, he could walk only very short distances inside the home; walking farther would consume energy he needed for communication, music, relationships, and basic care while increasing fall risk.

Physical therapy focused on maintaining mobility, positioning, range, and function rather than promising continual improvement. The benefit of movement had to be balanced against pain, seizures, POTS, and fatigue. His family adjusted a session or stopped it when the cost exceeded what his body could safely sustain.

Epilepsy and Lennox-Gastaut Syndrome

Minjae had drug-resistant epilepsy from childhood, including absence, tonic-clonic, and drop seizures. Medication management required repeated balancing of seizure control, side effects, alertness, digestion, and daily function. Postictal recovery could temporarily remove speech, intensify fatigue, slow processing, and require a substantial reduction in demands.

During brief atonic seizures, Minjae could experience an interruption in awareness and then recognize that his posture had changed or that he had missed part of a conversation. His awareness and recovery varied between episodes.

The pattern was recognized as Lennox-Gastaut syndrome during the post-Rome crisis and confirmed at Johns Hopkins after the early-2034 move. His family maintained detailed records of seizure types, duration, recovery, medication timing, illness, sleep, and related symptoms. Those observations gave clinicians a longitudinal picture that an appointment or isolated test could not provide.

In 2034, Minjae’s family added ‘’an Oura Ring’’ to that record-keeping system on Jacob’s recommendation. He wore the titanium ring on his right ring finger. Its sleep, movement, temperature, heart-rate, and recovery trends were compared with witnessed events and his seizure log; the device did not detect seizures, replace prescribed monitoring, or determine treatment.

During documentary filming in 2036, fatigue became visible in Minjae’s face and posture while his hands continued to play steadily. Myoclonic seizures began after he took his hands off the keyboard.

POTS, Migraine, and Chronic Fatigue

POTS affected Minjae’s tolerance for position changes, standing, exertion, heat, and prolonged upright activity. A rising heart rate, dizziness, weakness, pallor, or fainting could emerge during ordinary tasks as well as performances. His family monitored hydration, positioning, environmental temperature, and early warning signs rather than waiting for collapse.

Migraine could follow sensory overload, disrupted sleep, illness, or sustained strain. During the late-2037 construction of the attached suite for Cal and Jess, Minjae initially stayed near the work because he understood that the room was “for Caleb.” The hammering and drilling eventually caused severe distress and a migraine, and Joon-Ho helped him move to the garden.

Minjae also experienced severe, disabling chronic fatigue as part of his complex medical presentation. He did not have a separate ME/CFS diagnosis. His activity tolerance changed from day to day, and rest could be nonnegotiable even when he wanted to continue. The family learned his early signs of depletion and scheduled social contact, music, and appointments during stronger periods when possible.

Enlarged Adenoids and Snoring

Minjae’s adenoids were substantially enlarged in childhood and remained mildly enlarged in adulthood. He sometimes sounded stuffy, as though he had a cold, and typically snored softly with a nasal sound during sleep, including naps.

Gastroparesis and Nutrition

Gastroparesis caused nausea, early fullness, inconsistent tolerance, and difficulty obtaining adequate nutrition by mouth. Nari learned which foods, textures, temperatures, portion sizes, and schedules his stomach handled best. Calm meals and patient encouragement helped when nausea or fatigue made eating feel impossible; coercion increased both distress and physical risk.

Minjae used a feeding tube for supplemental nutrition when gastroparesis, severe fatigue, acute illness, or a post-viral crash made oral intake insufficient. He was already receiving tube feeds when he arrived in the United States in early 2034. Tube feeding was not his sole nutrition source. His family incorporated feeding, medication, and tube care into ordinary routines without treating equipment as the whole of his life.

Continence and Personal Care

By 2035, Minjae used a supportive shower chair for assisted washing in the Lee home’s roll-in shower. This was his established bathing arrangement for safety around his seizures and Lennox-Gastaut syndrome. He used “bath” loosely for getting washed, including in the shower chair; the word did not necessarily mean soaking in a tub.

Minjae had inconsistent bowel and bladder awareness and control related to his neurological and autonomic disabilities. He used pull-ups or tab-style briefs according to his needs. On stronger days, he could manage parts of a change with limited assistance; on more difficult days, he requested or accepted fuller help. Care was direct and matter-of-fact, with privacy, consent, and dignity preserved.

After the move, Joon-Ho’s insurance made consistent access to appropriate continence supplies easier than it had been in China. The Lee home was adapted for wheelchair movement, personal care, rest, seizure safety, and sensory regulation. These supports increased Minjae’s usable autonomy even when they did not reduce the amount of assistance he required.

Anxiety, Pain, and Self-Injury

Anxiety intensified when Minjae’s symptoms worsened, communication failed, or people around him became visibly distressed. Predictable routines, direct explanation, familiar people, environmental adjustment, and medication all contributed to management. Medical procedures and hospital stays remained frightening even when he understood why they were necessary.

Overwhelming pain or sensory distress could lead Minjae to bite his hands or arms, hit his thighs, or engage in other self-injury. During the most severe overload, he might also strike or bite a person who approached too quickly. Those actions communicated crisis rather than aggression. Support focused on lowering demands, reducing stimulation, preventing injury, preserving space, and helping him identify or communicate the source of distress without forcing physical intervention that escalated him.

Physical Characteristics and Presentation

Stature and Build

Minjae stood approximately five feet one inch tall and weighed around ninety pounds. He was extremely thin, with low muscle mass and limited physical reserve. His small stature and light weight affected transfers, positioning, temperature comfort, and how quickly illness or reduced intake became visible, but they did not make him physically passive. He propelled his wheelchair, reached for people and objects, danced, transferred with assistance, and played piano within the limits of the day.

Minjae had narrow feet and wore a US men’s shoe size 5½. His feet were sometimes cold when he had not put on socks.

Skin, Face, and Eyes

His skin was a warm light-golden tone. On stronger days, the warmth remained visible across his face; pain, dehydration, exhaustion, or acute illness could flatten the color and produce pallor or a gray cast around his eyes and mouth. Nari and other familiar caregivers used those changes as one early indication that his baseline had shifted. His skin was thin and bruised easily from medical procedures, wheelchair contact, and episodes of self-injury.

Minjae had a naturally round, soft, youthful face with full cheeks. Weight loss and fluctuations related to illness made his cheekbones and jaw more prominent while leaving the underlying roundness recognizable. His smile lifted his cheeks and changed his whole expression, which was one reason familiar people could identify so quickly when he was depleted or unhappy.

His eyes were dark brown, bright, warm, and highly expressive. Curiosity, amusement, uncertainty, pain, and refusal often appeared in his gaze before he could reach speech or AAC. Fatigue made his focus less steady and his expression more muted; a return of direct eye contact or visible interest could be an early sign that he was recovering.

Hair and Hands

Minjae’s hair was thick, silky, straight, and black. It was usually cut short to reduce grooming effort, keep it away from his face and eyes, and limit unwanted sensory input. Haircuts and washing were paced around his tolerance rather than treated as a fixed routine he had to endure without accommodation.

His hands were small, with thin fingers and uneven strength. Spasticity made grip and release effortful and could cause the muscles to tighten at precisely the wrong moment. Wheelchair propulsion left calluses across his palms, and self-injury sometimes left bite marks on his hands or arms. The same hands retained years of piano training: when his body allowed, his fingers could locate keys with precise musical intent even if tremor or spasm altered the execution.

Minjae often used his hands for connection. He reached for sleeves, fingers, forearms, and Minh’s hand in sleep. His grip could be fierce and asymmetrical, with one hand stronger than the other. Familiar people understood the difference between a reaching hand, a grounding grip, a refusal, and a movement produced by spasticity. For Logan and Charlie, the warmth of his hand closing around their fingers was profoundly grounding: Minjae was choosing to spend effort and limited motor control on holding someone he loved.

Voice, Clothing, and Equipment

At nineteen, Minjae’s speaking voice was soft and breathy, lower in pitch than Minh’s but still almost prepubescent-sounding. Heard without seeing him, it could sound feminine, with a timbre comparable to a mezzo-soprano woman’s speaking voice. Its youthful sound did not limit its adult emotional range. Irritation sharpened it, pleasure lifted it, pain thinned it, and musical humming could remain available after speech had narrowed to fragments.

He prioritized physical and sensory comfort in clothing. Soft T-shirts, hoodies, joggers, and other flexible fabrics reduced friction and did not bunch painfully during prolonged wheelchair use. His clothes were selected and fitted around seated posture, pressure points, temperature, medical access, and the ability to dress with assistance. Formal clothing required the same considerations; for his wedding, he wore a soft custom vest rather than sacrificing comfort for convention.

His preferred everyday clothes were casual: hoodies, striped shirts, soft joggers, and selected graphic T-shirts. He cared less about coordinating his whole wardrobe than about wearing particular favorites and could object to a replacement even when it was equally comfortable. When going out, feeling well, or taking Minh on a date, he enjoyed choosing a more put-together outfit. Fine-knit sweaters, comfortable cardigans, plain T-shirts, tapered stretch trousers, knit polos, soft overshirts, and vests gave him options that still met his comfort needs. He liked cream, muted blue, sage, and warm brown in those outfits. Choosing what he wanted to wear remained his decision when someone else helped him dress. He disliked wearing shoes and could insist on that preference even when others wanted him to keep them on.

He wore few decorative accessories. Medical-alert identification and practical equipment had priority, and he kept his wedding ring on a soft chain around his neck because hand spasticity made a finger ring impractical. His wheelchair, AAC, feeding equipment, postural supports, and wearable tracking were visible parts of his presentation without being the only things people noticed about him.

Proximity and Emotional Presence

Minjae’s openness brought out fierce tenderness in people around him. They softened their voices, moved more carefully, and attended to his comfort, discovering that they could express gentleness without embarrassment. Their response came from affection and connection rather than pity. His quiet warmth and pleasure in ordinary things recalibrated what mattered to them, stripping away distractions and returning their attention to the person beside them.

Loved ones experienced his physical vulnerability and emotional resilience together. His strength was apparent to them even when his body could do very little. For Logan, Charlie, Jacob, Minh, Minseo, Nari, and Joon-Ho, being near Minjae felt like coming home to a person. He was the reason behind their fights for access, accommodations, late-night care, financial sacrifices, and international relocation. They organized those efforts around his worth and their love for him; they did not experience him as the burden he sometimes feared he was.

His fully felt happiness filled a room. When he laughed with unreserved delight, his hyungs briefly put down the weight of their own histories and shared his joy. His pain and grief moved through the people present just as strongly. At the end of documentary filming, Julian and Kayla cried with him during the goodbye. They were responding to the emotional directness of someone they had come to love, not simply feeling sorry for him. His capacity to move other people coexisted with his anger, refusals, exhaustion, and need for support; it did not depend on his being cheerful for them.

Habits, Preferences, and Daily Life

Minjae adored photographs and looking through them, including photographs of himself. His enjoyment came from having pictures he could see and revisit rather than vanity.

Minjae’s favorite colors are pink and blue.

Minjae’s mornings required gradual waking, timed medications, positioning, dressing, hygiene, feeding or oral intake, and assessment of his seizure recovery and energy. On difficult mornings, getting him out from under a blanket could involve grumbling, refusal, or repeated bargaining. Predictable sequence reduced the cognitive effort of the routine, but predictability did not eliminate his right to have an opinion about it.

Food routines changed with gastroparesis and current tolerance. Nari and Minh used smaller portions, familiar foods, and flexible timing rather than insisting on a conventional meal. ‘’Juk’’ or ‘’zhōu’’ could provide both familiarity and a gentler texture. He preferred dairy-free cake and reacted to the pink strawberry interior of his wedding cake with a delighted shout of “CAKE!!”

Music remained present even when he was not practicing. He listened for pleasure and emotional regulation, hummed remembered passages, and sometimes prepared a short piece for Cal during video calls. Piano sessions were shorter and less predictable than during his Tianjin training, but he continued to play, compose, and record.

Minjae was frequently tired even at his usual baseline, and rest periods and naps were built into ordinary days. Performance days required frequent opportunities to rest or sleep when he was not playing, and recovery afterward could be demanding and prolonged. His rest needs and recovery time varied with his condition and the demands of the event. Social visits were often scheduled around his stronger hours, and his family sometimes ended an interaction before a well-meaning visitor recognized that he was depleted. He could resent those limits and argue against them; the care plan accounted for both the medical need and the emotional cost of stopping something he loved.

Minjae frequently rested or slept during paratransit and van rides. For early-morning pickups or journeys after a long day, he could already be asleep in his wheelchair when boarding, with a blanket over him and his headphones on. Bernice was one of the familiar drivers on his recurring trips with Minh and was fond of them both.

Family and Core Relationships

Nari, Joon-Ho, and Minseo Lee

Nari coordinated much of Minjae’s daily care and served as a primary source of comfort during pain, nausea, seizures, and fatigue. She understood small changes in his face, body, and voice, sat with him without demanding an explanation when language was unavailable, and helped him eat when gastroparesis made food difficult. Her knowledge of his baseline supported rather than replaced his own communication.

Joon-Ho approached equipment, insurance, records, transportation, and medical logistics with an engineer’s precision. His own autism contributed to a shared preference for clarity and pattern, while Minjae’s other disabilities required knowledge Joon-Ho acquired through research and observation. He coordinated much of the family’s international move and maintained the practical systems that let Minjae reach care, music, and community.

Minseo was eight years older than Minjae and grew up sharing substantial caregiving responsibilities without becoming his second mother. She was his protective older sister. Her later medical education gave her additional language for translating specialist recommendations into practical family decisions and presenting the family’s observations in terms clinicians understood. She also learned when Minjae wanted her to intervene and when he wanted time to answer for himself.

Minh Tran

Main article: Minjae Lee and Minh Tran

Minjae and Minh knew each other from early childhood through Nari and Mei’s friendship. They attended Tianjin Juilliard Pre-College together, with Minjae studying piano and Minh cello, and their friendship became a teenage romance. Around Minh, Minjae stuttered less and did not have to teach every detail of his expressions, habits, or access needs from the beginning.

Minh accompanied the Lees to Rome and remained with them through the post-competition crisis and early-2034 move. She translated when necessary, tracked seizure and fainting signs, managed practical care, and waited for Minjae’s own answer rather than turning familiarity into control. Her partnership with him included medication, appointments, food, positioning, music, humor, touch, argument, and ordinary young-adult intimacy; she was his partner, not merely a caregiver.

On December 27, 2034, Minjae proposed through a prepared AAC message and a simple silver ring set with a tiny heart-shaped stone. Minh accepted. Friends later arrived at the Lee home with cake and balloons to celebrate. The couple married in early fall 2036, before Minjae’s October 1 birthday; Minjae was twenty and Minh was twenty-one.

At the wedding, Minjae delivered halting Mandarin vows that promised tea, music, flowers, care on difficult days, and a written reminder of his love if his memory ever failed. He drove his wheelchair down the garden aisle himself with power-assist after setting Tobi and his blanket aside. His ring remained on a soft neck chain. The reception included a supported first dance, his delighted response to the five-tier cake, personal-care support, and seizure clusters handled without turning the celebration into a medical spectacle.

CRATB Chosen Siblings

Charlie became an especially close older-brother and mentor figure because he shared Minjae’s experience of POTS and gastroparesis and lived openly as a disabled musician. Minjae saw that Charlie’s illnesses did not eliminate humor, love, artistic work, or a future. Charlie called him ‘’mi amorcito’’ and “baby boy”; Minjae called him ‘’Charlie-hyung’‘.

Jacob’s relationship with Minjae began in Rome through artistic recognition and seizure-aware respect. It grew through their private correspondence, the family’s move, engagement and wedding celebrations, the ‘’Still Here’’ sessions, and music offered during illness. Minjae idolized Jacob but also came to know him as ‘’Jake-hyung’‘, an older brother who treated him as a musician.

Logan first entered Minjae’s life through the remote consultation during the post-Rome crisis and helped coordinate the transfer and receiving-care plan. Their connection deepened after the move through Baltimore medical and community networks. Minjae called him ‘’Lo-hyung’’ and sought him not only for clinical reassurance but as chosen family.

Peter Liu, Ezra Cruz, Elliot, and Riley also became chosen older siblings through the CRATB community. The seven relationships were distinct; ‘’hyung’’ did not mean that every person served the same role. Peter offered steady practical support, Ezra brought direct warmth and celebration, Elliot provided quiet presence, and Riley’s relationship-specific use of the term reflected Minjae’s established bond with them.

During Minjae’s late-2035 norovirus hospitalization, he cried for Lo-hyung and Charlie-hyung. Logan could not enter an active norovirus environment safely because of his asplenia and other health risks, so Charlie explained the boundary and Minseo connected Logan, Charlie, and Jacob by FaceTime. Charlie played guitar and sang while Jacob accompanied on keyboard. Minjae hummed with them and fell asleep holding the tablet.

Caleb Ross

Main article: Caleb Ross and Minjae Lee

Minjae met Caleb “Cal” Ross through a video call arranged by Nari and Jess in early 2036, before the documentary. Their calls became regular, then nearly daily. Minjae sometimes played piano while Cal listened and hummed; at other times, they sat together without demanding spoken conversation from each other.

Cal and Jess first visited the Lees for nearly two weeks in late spring or early summer 2037. Cal’s six-foot-three, nearly 300-pound body contrasted sharply with Minjae’s small frame, but Minjae did not flinch from his size or touch. Their communication developed through music, AAC, nonword vocalization, gesture, positioning, and sustained physical presence. With family supervision and safe positioning, Cal could hold Minjae during rest, and both settled more easily together.

During a mall outing, Minjae used money from his managed account to buy Cal a giant Mufasa plush. The toy was shipped to Portland after the visit and helped reopen contact during Cal’s painful withdrawal after the separation. The Lees began expanding their attached suite for Cal and Jess; a second visit occurred during the late-2037 construction. They permanently moved from Portland in March 2038, after which the young men’s friendship became part of both households’ daily life.

Day Programs and Community Access

After the Baltimore move, Minjae and his family explored programs intended to provide social contact, skills, art, and community participation for developmentally disabled young adults. At least two placements failed before he and his support worker, Ari, found a better program by early 2037.

The first program was loud and institutional, with fluorescent lighting, a television playing, infantilizing sing-song speech from staff, and activities such as ‘’Paw Patrol’’ coloring. Staff pressed Minjae to join the group before he could regulate or learn the space. As his overload escalated, Ari removed him within the first hour. The director’s expectation that he should simply “push through” showed that the program did not understand either his sensory access or his medical limits.

The second program initially appeared quieter and more respectful. Minjae engaged with an art activity and used AAC to say that he needed a nap when fatigue hit. Staff told him to “just finish” because they were “almost done.” By the time Ari returned from a meeting, Minjae had collapsed over the table, could not hold up his head, was breathing rapidly and shallowly, and had blue paint in his hair. Staff treated the event as ordinary tiredness and defended “pushing through discomfort,” “leaving his comfort zone,” and “letting him fail.” Ari and Nari identified the actual failure: Minjae had communicated a medical need, and the program had erased the answer.

The later placement centered music and art and used staff familiar with AAC, trauma-informed care, disability access, and medically necessary rest. Flexible arrival and departure, naps, stimming, lower-stimulation space, and stopping without shame were built into participation. Minjae could engage when able and rest when necessary without either state being interpreted as a moral achievement or failure.

Public Work and Documentary

As Minjae’s public career gained momentum, Audrey Zhou was hired as his publicist after vetting by Nari and Joon-Ho. Audrey was Chinese-American and used her English name professionally, while the Lees and other Mandarin speakers knew her as Zhou Yining (周怡宁). An Instagram account was set up for Minjae, and he loved it, extending his existing enjoyment of photographs to the account.

Main article: I Am Still Me - Documentary

After Minjae and Minh’s wedding photographs drew widespread attention and ableist commentary, Resonance Films approached the family about a documentary. Joon-Ho initially feared exploitation, and Minseo insisted that the decision be put to Minjae. He agreed on the condition, “Only if they show my music. Not just sick me. Music.”

Director Julian Reyes and producer Kayla Rossi filmed ‘’《我还是我》/ I Am Still Me: A Minjae Lee Story’’ over multiple visits to the Lee home. The feature-length documentary covered daily routines, marriage, music, pain, seizures, fatigue, and family life. Minjae wanted the difficult footage included rather than allowing the film to construct a permanently cheerful or inspirational version of him. In Mandarin, he told the filmmakers, “Don’t cut the hard parts. They’re me too. That’s still me.”

During one filmed morning, a cerebral-palsy flare left him in severe pain and produced the thumb-biting exchange later retained in the film. Other scenes showed him playing music, looking through the wedding album with Minh, arguing for his own understanding, and insisting that his marriage and joy belonged beside illness in the record of his life. Several excerpts from ‘’Still Here’’ formed part of the score.

Minjae became attached to Julian and Kayla, called them his “movie friends,” and sometimes resisted rest because he wanted to stay with them. He called Julian “Ju-huying,” adapting a name he found long to say. When filming ended, he cried and asked them not to leave. The bond continued after production rather than being treated as a performance for the camera.

The documentary premiered at a Los Angeles art-house theater on March 20, 2037. Minjae attended with Minh despite feeling unwell, then gave himself permission to sleep in the green room through the second part of the screening. The people celebrating with him were proud of both his attendance and his decision to rest. PBS later acquired the film for streaming. It drew a particularly strong response from disabled viewers and families living with Lennox-Gastaut syndrome while also prompting public debate about consent, pain, marriage, and who is permitted to be understood as a full adult subject.

Legacy and Impact

Minjae was still building his life, but his impact already extended beyond his immediate family. The sustained love and sacrifices surrounding him challenged accounts of disabled people as burdens. His marriage to Minh offered public representation of a serious adult romantic partnership between young people whose life together included substantial disability support. Their joy, commitment, and ordinary intimacy remained visible alongside that care.

His relationships with older disabled CRATB musicians were reciprocal. They gave him models of possible adulthood, artistic work, love, and community; he gave them meaningful connection to someone earlier in the disability journey. Their mentorship grew into sibling relationships in which his affection and openness enriched their lives as well as his own.

The national reach of I Am Still Me established Minjae as a public figure within disability advocacy and offered a model of portraying disabled life with dignity and truth. His insistence on including both music and difficult days gave that representation its direction. In private relationships, his readiness to trust reminded people close to him of the value of openness over cynicism. That trust created connections they treasured, even as his family continued helping him recognize exploitation and protect himself.

Characters Supporting Characters Living Characters Korean Characters Chinese Characters Disabled Characters Chronic Illness Characters Wheelchair Users Neurodivergent Characters Autistic Characters Musicians Pianists Lee Family