The Twitching "Vegetable" Boy - He Junjie

•2021 June updated

"There's no cure! Out of over 400 cases worldwide, he's the only one in Hong Kong. Even doctors haven't encountered it..." This unique situation in Hong Kong is truly ironic! Eight-year-old He Junjie, currently before us, has a soft, paralyzed body, rapid breathing, an inability to speak, dull eyes, and slow reactions. He needs a safety belt to keep him stable in his wheelchair. Continuous wheezing is mixed with low moans, "yi-yi-oh-oh," and sudden "ka-ka" coughs. His mother quickly covers Jun-jie's small mouth, clearing the thick phlegm from her hands at lightning speed before rushing back to her son. She watches him every second, fearing endless seizures. These hands, unable to be adorned, haven't rested for a moment since her son was diagnosed with this rare disease.

Unpredictable: Sudden High Fever and Diagnosis at 1.5 Years Old

Recalling the past, Jun-jie's mother said that he looked no different from other children, but his development was slower than his twin sister, Xi-tong. "He'd fall easily when sitting, and didn't walk very well when he was learning. We just thought he was a bit slow and didn't pay much attention." At one and a half years old, Jun-jie suddenly developed a high fever. Just as he was about to be discharged after a week in the hospital, his eyes suddenly tilted, his limbs stiffened and twitched. After intermittent seizures for two hours, he was sent to the intensive care unit and diagnosed with Succinic Semialdehyde Dehydrogenase Deficiency (SSADH), a condition where the brain lacks a certain enzyme, leading to frequent seizures.

"During the embryo and baby stages, genetic tests didn't detect it. It was only when he was about one and a half, and the enzyme level became progressively lower, that it was discovered. Insufficient enzyme causes seizures and developmental delays." Other symptoms include sleep disorders, ataxia, epileptic seizures, and more.

Non-stop Seizures, Vegetative State: Mother Holds His Hand While He Sleeps Every Night

After the onset of the illness, Jun-jie's mother described him as being in a "vegetative state." "He used to be able to walk, talk single words like 'car' and 'daddy,' and play with toys. But ever since he came out of the hospital, he's been comatose, having dozens of seizures a day, his limbs unresponsive and motionless." Once, during a severe episode, Jun-jie's entire body stiffened from the seizures, he became hypoxic, his eyes rolled upwards, his lips turned black, and he was completely unresponsive for five or six minutes. His terrified mother immediately called an ambulance. Since then, his mother holds Jun-jie's small hand while he sleeps every night, "At least I'll know if he's having a seizure while he's asleep."

To control the seizures, doctors recommended Jun-jie undergo a ketogenic diet, consuming Ketocal formula. His mother initially insisted on feeding him "pureed food" orally, but Jun-jie frequently choked due to swallowing difficulties, leading to pneumonia, and he couldn't absorb the necessary nutrients. At five years old, he weighed only 10 kilograms. "If he chokes and it doesn't go down, the ketones won't be produced well, leading to more seizures. Basically, he was in the hospital every month." Despite her immense reluctance, his mother had no choice but to accept the insertion of a nasogastric tube for formula feeding. At the end of last year, he underwent surgery to switch to gastrostomy feeding.

Suffocating 80 Times an Hour, Sleeping Like Drowning or Being Choked

"Every day we gain is a bonus; his life is counting down." Jun-jie's brain atrophy is severe, his cardiopulmonary function is failing, and he has kidney disease. "The doctor said that generally, by age 11 or 12, it's not the disease itself that takes his life, but possibly other side effects." There's also sleep apnea, which could "take his life at any minute." "When he's sleeping, his face turns red, then black, as if he's stopped breathing." The doctor explained that Jun-jie suffers from over 80 episodes of apnea per hour, causing his blood oxygen levels to drop rapidly in a short time. "It's like someone is choking him, or he's drowning and can't breathe, struggling. If he wakes up, he's lucky; if not, he's gone."

The doctor's words made his mother "burst into tears" and her heart bleed. "I don't know how to accept it. I sleep with him every night, and I didn't even know he was struggling on the brink of death. It's so painful, I feel so miserable." To alleviate Jun-jie's sleep apnea, an oxygen concentrator has been rented for home use, ready at all times. When they go out, an "oxygen tank" (oxygen bottle) is always with them, just in case Jun-jie "can't breathe properly." However, all these measures are merely treating the symptoms, not the root cause.

Sold Car and House for Son, Over HK$200,000 in Debt

The couple had been working in the tourism industry in mainland China, commuting daily between China and Hong Kong. The mother frankly admitted that facing Jun-jie's worsening condition and the heavy medical burden, "we sold the car, sold the house, sold everything that could be sold." For Jun-jie, they had spent over four million in savings over the years.

With the COVID-19 pandemic raging, the couple has been unemployed for many months since the beginning of the year. The mother also couldn't work anymore due to caring for Jun-jie. With no income, she had to overspend on credit cards. "He needs formula, and even if we don't eat, he still has to." Jun-jie currently has four meals a day. One 300g can of formula ($380) is only enough for six meals, so the monthly formula expense is about $8,400. "We also have rent and other expenses, totaling at least $30,000 a month." With over $200,000 in bank debt, the family relies solely on the father, who works temporary jobs in mainland China. The father frankly admitted he "can't take it anymore," saying, "Let him go naturally, let him not suffer so much!" The couple has argued over this before.

"Can't Leave Him for a Minute"

With her father working in mainland China due to the pandemic, the young siblings haven't seen him for several months. Their mother has been sleeplessly and single-handedly taking care of them. Throughout the day of the interview, the mother was constantly "moving in and out," engaging in an endless routine of "chores": feeding, administering medicine, stretching, using the standing frame, bathing, changing diapers... each task was a "big production." Just feeding alone took 40 minutes per meal, not to mention the preparation beforehand. There were various medicines: anti-seizure, muscle relaxants, phlegm suppressants, sleeping pills... Every day, she trained Jun-jie's cardiopulmonary function, spending an hour on the standing frame and stretching, which was exhausting! During this time, she often had to help Jun-jie cough up thick phlegm, pat his back, turn him on his side, clap her hands and sing to him. "I can't leave him for a minute," so it's no wonder her body aches from the strain.

Fortunately, his sister, Xi-tong, acts as a "little helper." "She helps me with so many things. When I'm cooking or when my brother is in the standing frame, she helps me watch his head for any danger. She knows to turn him on his side when he coughs, and she immediately calls me when he has a seizure."

"Mommy, treat me like my brother and hug me"

"Mommy, don't worry, you rest. I'll watch over brother." Xi-tong is the little angel of the family, bringing healing. When her brother was hospitalized, her mother often sighed with worry, and Xi-tong's heartwarming comfort was a welcome addition. "Mommy, treat me like my brother, hug me and pretend I'm my brother keeping you company," she would say. She also tells stories to cheer her mother up and often draws pictures to encourage her brother... Her mother was both touched and guilty to see this. "Actually, it's very unfair to her. I feel so guilty for not taking good care of her, but she doesn't complain at all and is very understanding of me."

When his father wasn't around, Hei-tung was her mother's only solace. "She's truly my spiritual pillar; I tell her everything." Xi-tong's drawings became her mother's "spiritual food." "It's I who can't do without her, not she who can't do without me."

On that day, Xi-tong received a notebook as a gift from Group Leader Group volunteers, and it came in handy. Xi-tong gripped the notebook and said, "Sometimes when my brother has surgery and you're busy, Grandma comes to take care of me. I'll write in this notebook so when you come back, you can see what I want to tell you, okay?" "Okay! You can write anything you want to tell Mommy in this notebook, don't keep it inside." After that, mother and daughter embraced tightly, as if making up for all the missing pieces.

Dear Brother,

I know you're in a lot of pain, but you must persevere, and you must not leave us.
If you leave me, I'll be very, very sad. I'll take good care of you from now on.

Things that make Mommy unhappy

Mommy is very unhappy when Brother isn't around. Daddy is abroad, and we haven't seen Daddy for 4 months. Mommy really misses Brother and wants him to come home to play together.

Son, "I'm sorry!" You must go further

"At that time, I cried every night, every day. I felt so helpless." His parents had searched all over hospitals and doctors in mainland China. "They didn't even know what this disease was, they'd never heard of it." She confessed that she was on the verge of a mental breakdown and had once "lost her temper" with Jun-jie. "Before he took sleeping pills, he couldn't sleep. He would cry until dawn every night, and I would hold him to comfort him. I cried until I was so annoyed that I would push him aside and scold him. After scolding him, I would hold him and cry, telling him I was sorry, that Mama wasn't good." "Sometimes I would resent him, asking why he made me like this now. But then I'd think back and realize that I was actually harming him, that I brought this disease to him."

By confiding in church friends, the mother finally found an outlet for her pent-up emotions and slowly accepted Jun-jie's deteriorating reality. "Given his current condition, I know it's not something doctors can cure, so I've accepted it." Although she later discovered an SSADH association in the US and had wanted to take Jun-jie there for treatment, the costs were enormous, requiring a doctor and nurse to accompany them throughout. "It wasn't as simple as I thought." However, the mother also connected with the association through a doctor to participate in research. "It's not about trying medicine, but about researching how to detect this disease in the embryo stage, so it doesn't happen like with us, where we only find out after birth. That's truly a painful thing."

Life Has No Breadth, Only Hope to Extend Son's Life

After two years of waiting, with the help of social workers, they successfully applied for funding to purchase an orthopedic wheelchair to prevent the worsening of Jun-jie's scoliosis. As time goes on, the mother fears that one day she won't be able to carry Jun-jie, hoping to custom-make a bathing chair and a hoist for him to facilitate movement. She also hopes to get him a new standing frame, as the current one is temporarily assembled and not convenient or safe enough to use. "When we can't even afford to eat ourselves now, how can we bear these medical expenses?"

Once, the mother's wish was for the whole family to travel abroad. "I really want him to experience this world."
Now, the mother holds onto her faith, looking at Jun-jie, "Life has no breadth. I will try my best to prolong his life."

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June 2021 Update

Restarting a Happy Life

Ms. Ho said that Jun-jie's physical condition has improved this year, "He's grown up a lot and is happier."

Although Jun-jie has to use a wheelchair permanently, it does not hinder the family from enjoying outings and exploring.

Activities like going to parks, playgrounds, and swimming have allowed Jun-jie to experience a colorful world, bringing back his long-lost smile.
Please leave your blessings for Chun-kit on Facebook, wishing him continued health and growth.

March 2021 Update

Successful Fundraising for Medical Equipment

Jun-jie, fight on!
Thanks to everyone's kind donations, He Jun-jie, who suffers from Succinic Semialdehyde Dehydrogenase Deficiency (SSADH), has received some medical equipment and accessories, such as an oxygen concentrator, hoist, bath chair, tubes, physical therapy, formula, nutritional supplements, etc. An electric standing frame custom-made in the United States will also be shipped to Hong Kong soon.

Jun-jie's mother and sister are grateful for the support from kind-hearted people. Although there is no cure, the seizure problem is currently well-controlled; his kidneys, affected by the ketogenic diet, are continuously monitored; overall, there has been some progress, and he has temporarily escaped the shackles of the hospital, returning to school life.

Please continue to donate monthly to support Jun-jie, so he can grow up healthy and strong.