Maruko-chan who Dislocates Easily - Bux Hei Yau, Annie

●March 2021 Update: Back in the Operating Room

Maruko-chan who Dislocates Easily:"I want to be a happy person!"

"I'm Bux Hei Yau, I'm 4 years old, and I'm in nursery school."
"I want to be a happy person!"

The images flash back to last Christmas, during a visit to the children's hospital, when Lifewire first met Hei-yau. Her "Maruko" hairstyle, her eyes squinted into cashew shapes, and her laughter echoing through the ward... all are still fresh in memory. However, what left an even deeper impression was this "happy person" with her hips and legs in plaster, her legs bent outwards in an O-shape, making her waddle like a duck when she walked.

"Waddling like a duck" – Incurable dislocation

When Hei-yau started learning to walk at one year old, she already "waddled like a duck." At that time, doctors said it was "normal." By eighteen months, the disparity between her and other children her age grew, so her father sought help from a private doctor, who then diagnosed her condition.

"Initially, I couldn't believe she had this illness, and I had no knowledge or concept of it." Even doctors couldn't provide a treatment plan for this rare disease. What's more, the doctor frankly stated that dislocations don't just occur in the legs, and might appear in other joints in the future. All they could do was treat symptoms as they arose, "like treating a headache for a headache, or a foot pain for a foot pain." They didn't know when the condition would suddenly worsen, nor did they have a definitive cure.

Endless surgeries, always back to square one

Though the surgery was over, the battle continued endlessly.
During the surgery, doctors securely joined the bones, and the situation seemed good for a while. However, X-rays later revealed that the hip joint had loosened again. It turned out there was an "ERROR" at the joint, preventing the bones from fitting together snugly. As a result, Hei-yau underwent a second and then a third surgery.

"It's like playing Snakes and Ladders; if you roll a double six three times, you return to square one and start over." Doctors were at a loss and stated that a complete recovery was impossible. Hankel also admitted feeling helpless, like everything he did was in vain. "You don't know when it will happen, or when it will end." Hankel could only blame himself, "Why did I only trust one doctor? Why wasn't I more diligent, asking more people or taking an extra step?"

No crying! No pain! I want to get better!

"No crying!" "No pain!" "Hei-yau is awesome!" These powerful childish words, conveying a sense of helplessness, coming from this little girl are both adorable and pitiable. When asked, "Does your little leg hurt?", this small mushroom-headed girl always replies with a firm "No!" Her resilience is heartbreaking.

But occasionally, she points to her post-surgery scars and acts spoiled. Her father tells her it's a testament, proof of her strength. Hei-yau always regains confidence: "Awesome, I want to get better! I want to get better!"

This four-year-old child has been tormented by illness, growing up under the cold surgical knife. Yet, she exudes warm smiles and overflowing positive energy. Her father contentedly says that it's his daughter's smile that reminds him to live in the present with equanimity. "Yes, if there's a hurdle to cross, then we cross it!"

A family of four, two with chronic illnesses

Gritting his teeth and enduring was already tough enough, but Hankel also worried about his wife. Hei-yau's mother suffers from Multiple Sclerosis (MS), a disease of the central nervous system (brain and spinal cord). Her left arm and leg are weak, making it difficult for her to care for and hold their children. While handling daily chores isn't a big problem, she often experiences short-term memory loss and can't find her way even in familiar places near home. Therefore, when Hankel isn't home, his wife and children have to stay indoors and dare not go out.

To care for his family, Hankel had to quit his full-time job and take on freelance design work. "I tried working full-time, but I couldn't take care of Hei-yau, and it was tough on my wife, affecting her condition too..."

Without a stable income, even with government disability allowances, surgical fees often run into tens of thousands to hundreds of thousands. Their savings were exhausted after the first surgery. When they learned a second surgery was needed, "it was a bolt from the blue, because we had absolutely no money left, we were completely broke!" Facing urgent needs, they had no choice but to crowdfund from relatives and friends to get by. "It's really hard. Once you ask, you can't ask a second time." The small income they earned quickly had to be returned to relatives, making life difficult and tight.

Don't want to be a great person, just healthy and happy

As Hei-yau spends more time in the hospital and cannot run and jump freely like other children, Hankel worries about her cognitive and social development. Therefore, he tries his best to arrange for her to attend school when her physical condition allows. "I don't want her to be a great person; I just want her to be healthy and happy, it's that simple!"

"Daddy, Thank You! I Love You!" Hei-yau's angelic smile is her father's greatest reward. Life has no fixed trajectory, but with family by your side, even the toughest hurdles have a reason to be overcome!

We are happy good children

Hei-yau attends Kowloon City Baptist Church Kindergarten. On this day, the Lifewire team was arranged to conduct an interview, and Hei-yau appeared cheerful, even actively helping other children, and was particularly proactive during English class.

Her class teacher, Ms. Ko, described her: "Hei-yau rarely pouts or is unhappy."

Principal Law Tsz-wai described her personality as full of joy, "bringing positive energy back to our school."

Principal Law stated: "Due to Hei-yau's prolonged hospital stays, many of her reactions and speaking skills have not met the standards of children her age." She hopes to help Hei-yau gradually catch up and encourages her and her parents to participate in activities like birthday parties to experience the group atmosphere. Her only regret is that Hei-yau cannot participate in normal physical activities, and she hopes for her speedy recovery.

Hoping for societal concern for rare disease patients

Ms. Ko often holds Hei-yau's hand with one hand and a cushion with the other. "When Hei-yau sits, having a cushion makes it less uncomfortable."

In Hei-yau's situation, the school provides full support and has even arranged a care group to monitor her learning progress, aiming to help her integrate into the learning environment.
"I believe some people are prejudiced against them, thinking they are a hindrance or a burden." Principal Law hopes that more people will pay attention to rare disease patients and appeals to everyone to offer them a smile, a wave, a nod, or a seat, as this would be tremendous encouragement and support for them.

March 2021 Update

Hei-yau, who suffers from "developmental dysplasia of the hip," re-entered the operating room in mid-January! Because the joint development couldn't fully cover the surrounding affected area, the surgically repaired site (especially the posterior part near the pelvis) still had gaps. Coupled with her inherent developmental dysplasia, doctors believe there is still a risk of dislocation in the future!

This surgery "repositioned" the uncovered posterior part to maintain the affected area in the optimal position, allowing Hei-yau to grow on a more stable foundation in the future. Father Hankel says: "The doctors have done all they can; now it's up to Hei-yau!"

One surgery after another, this adorable "happy person" bravely faces them as always, continuing to say "No crying, no pain, I want to get better!!" Please continue to support little Hei-yau, hoping for her speedy recovery, "No dislocations!" and "Delete" future worries!

Please participate in monthly donations to support Hei-yau's long-term medical needs.