The "Book of Searching for Gods" once recorded: "There are fish people outside the South China Sea, who live like fish in the water and do not waste weaving performance." Its eyes cry out of beads. "The fish people here refer to what we often call mermaids.
Whether in the East or the West, mermaids have always been a symbol of beauty and purity in people's minds, containing people's infinite reverie of ideals and love.
What many people don't know, however, is that mermaids do not only exist in distant mythological stories, not only in fantasy-filled film and television dramas, but also in the real world we live in together.
"Mermaid syndrome" is an extremely rare congenital malformation of the lower extremities, also known as parallel leg deformity, in which patients are born with adhesions on the inside of their legs that look much like a mermaid's tail.
Due to the incomplete development of some organs, most "mermaids" die within a few hours of birth, and their lives are like cherry blossoms, short and poignant.
Even if life is maintained by medical means such as surgery and drugs, it is difficult to survive like a normal person.
It can be said that once the disease is equivalent to a terminal illness, you can only helplessly wait for the arrival of the god of death.
Fortunately, this condition is extremely rare, with a probability of only one in seventy thousand; unfortunately, our protagonist today, "Mermaid Girl" Hilo Payne, is one in this unfortunate seventy thousand.
01 suffered from a rare disease and was asserted to live no more than one year old
Clocks go back to August 4, 1999, in an ordinary couple in a hospital in Maine, USA, who are happily preparing for a new life in the delivery room, which is also the crystallization of their love.
After an hour of painful childbirth, a girl named Shiloh was born.
However, to the surprise of the doctors and nurses present, they found that the child's lower limbs were all connected together, from the waist to the soles of the feet, like the little mermaid in a fairy tale.
This is not good news, due to the deformed adhesions of the legs, Hilo's body organs are not fully developed.
Hilo's bladder, large intestine, and entire reproductive system were completely missing, and the kidneys responsible for metabolizing harmful substances in the body were also lost.
This means that little Shiloh cannot excrete normally and may lose his life at any time due to various infections that appear in the body.
In addition, when she was born, she weighed only 2.9 pounds, half of a normally born baby, and had severe stunted growth.
In general, if the adhesion is not very thorough, it is possible to perform lower extremity separation surgery. But little Shiloh was not so lucky, her legs were too thoroughly glued, the various nervous systems and blood vessels in her body were intricately intertwined, and the position of her kidneys was also relatively special.
If surgery were forced, the risk would be very high, so, weighing it out, Hilo's parents chose not to undergo separation surgery. But even so, little Shiloh's hope of survival is still very slim.
Doctors who know something about the disease told Hilo's parents that from the current cases, the life span of "mermaid syndrome" patients is very short.
Even with a range of medical techniques, she would certainly not have lived to be a year old. In order to alleviate little Shiloh's pain, doctors did not recommend that Hilo's parents take treatment.
Looking at the sleeping face of little Shiloh, the couple's mood was extremely painful, whether to let go of the pain of the daughter like this, or to insist on letting the daughter see the world more?
It was a tough choice, but it was also a choice that had to be made.
In the end, they decided to continue their daughter's life as long as possible, to experience this strange world as much as possible, so that she could walk through this experience without regrets.
Perhaps it was the parents' expectations that infected little Shiloh all the time, giving her hope and courage to continue to live, and bursting out of her body an amazing will to survive.
After a series of treatments and careful care by his parents, Shiloh managed to escape death's verdict.
Time moved forward bit by bit, and soon Little Shiloh grew to one year old, and all the indicators of his body showed normal, and the doctor's prediction that "he would not live to be one year old" was self-defeating.
Of the unfortunate one-in-seventy thousand "mermaids," Shiloh became the luckiest one.
150 surgeries in 28, life under the flash
Although he survived the dangerous period by chance, due to the lack of body organs, in order to continue to maintain his life, Little Shilo must constantly treat and take medicine.
From birth to age 8, Hilo underwent nearly 150 surgeries, including kidney transplants, and spent almost all of her short life in hospitals. On the small body, there are large and small scars, knife scars and pinholes everywhere.
While the other children were playing carefreely, Shiloh was confronted with constant pain and cold medical equipment.
Although Hilo was young, he showed unusual sense and strength. In the process of treatment, from kidney replacement surgery to injections and medicines, Shiloh never cried out a pain, cried out bitterness, and even comforted his parents who were too worried.
Because she knew in her heart that her limited life was snatched from the hands of the God of Death little by little through treatment.
Due to the hormones contained in the drug, Shiloh's body is getting fatter and fatter, and his movements are also very inconvenient, which is not good news for a beautiful little girl.
The daughter's hard work and strong parents see it in their eyes and hurt in their hearts. Hilo's father even quit his job to spend time at home with her.
The special experience of this family has also attracted the attention of the media, who hope to spread the story of Shiloh to more people, so that people have more tolerance and understanding for children like Shiloh;
I hope to convey the optimism and strength of little Shiloh in the face of misfortune and doom, so as to inspire more people who are suffering from illness.
In 2009, the popular American program "Oprah Talk Show" invited Hilo to the show and conducted a special program about "Mermaid Syndrome".
In the show, she wears her favorite blue dress and a pink hair ornament on her head, and talks confidently and generously.
When the host asked her if she minded being called a "mermaid girl", Shiloh was very calm.
"I love the title, that's how I was born, and although life was really tough, I, like everybody else, have a lot of things to do, I want to be an actress, a princess, try anything."
For Little Shiloh, illness is not an obstacle, hardship is not an excuse, and the most important thing is that he wants to constantly explore and try.
This ten-year-old girl's reflection on life and resistance to fate are surprising and admirable.
After the show aired, the confident and optimistic Hilo set off a discussion about the "mermaid syndrome", and Shiloh himself harvested a large wave of fans. There are even children of the same age who leave messages on social media to Shiloh, hoping to become friends with her, and people who are suffering from illness leave messages saying that they are encouraged by her.
03 Optimistic and strong, the pistachio in the eyes of everyone
Bad luck eroded her, tormented her, but it could not overwhelm her. As Hemingway said, "What cannot kill me will make me stronger." ”
Apart from the physical differences, Hilo was no different from the other children. She learned through her own efforts to get up on her own, to dress herself, to wash herself, to eat by herself; she likes to wear skirts, she likes to paint beautiful colors on her nails, and she likes to play with a large group of friends.
Hilo also asked his father to sign up for a swimming class for himself, because in the water she only needed to use the swing of the "tail" to move as she wanted, which made Shiloh, who had been relying on a wheelchair, feel extremely free and happy.
When Hilo was six or seven years old, he made a request to his parents that had always been pressed in his heart: to get the opportunity to go to school like other children.
As for their daughter's expectations, Hilo's parents naturally tried to meet them as much as possible.
With the help of her parents, Little Shilo entered a private school as she wished, and such a hard-won opportunity made her extremely happy and cherished.
In school, Shiloh was not afraid and afraid of her illness, on the contrary, she communicated generously and bravely expressed, generously looked directly into the strange eyes of others, and used all her senses to experience and understand.
Perhaps because the smile and optimism on Shiloh's face were too contagious, the children of the school surrounded her one by one, and both the teachers and classmates were very fond of this optimistic little girl.
"All the kids love her, she's like a role model for the kids." Teachers at school say so.
When Shiloh is alone, her favorite thing to do is to read story books, often watching them for an afternoon, immersed in a colorful world.
In order to make Shilo's memories even better, the parents often take Shilo around at the first opportunity. The family makes games, eats barbecues, and enjoys a warm family time together.
Although he is different from others, in the face of all kinds of discomfort and pain in life, Shiloh always lives with a smile and a smile.
Her optimism and cheerfulness, again and again, infected those around her, making people unconsciously ignore the great suffering she suffered.
For Hilo's parents, Shiloh was never a burden, not a bitter fruit, but the best gift that fate had given them. "Shiloh gave us so much more than we gave her."
03 Unfortunately died of a cold, and the incarnated angel was gone
But as time passed, Shiloh had to accept once again the challenge of fate. And this time, she couldn't carry it.
For patients with "mermaid syndrome", due to the weakening of kidney function, their ability to resist the virus is inherently weaker than that of ordinary people, so any little wind and grass may take their lives.
At the age of 10, Shiloh accidentally contracted pneumonia from a cold. In other words, it may not be a big disease for ordinary people, but for Shiloh, it is enough to be the culprit who took her life.
The inflammation caused by the sudden pneumonia, coupled with the long-term accumulation of toxins in the treatment drugs, made Hilo's body overwhelmed and eventually lost.
After struggling for more than half a month, Shiloh was unable to survive the crisis and left the world that made her incomparably attached to her forever.
Hilo's parents buried her sister, who died the same young as herself, hoping that the two sisters would be companions and not be so lonely.
On Hilo's tombstone, surrounded by several colorful butterflies, Hilo's favorite animals are because they are beautiful and free.
Tagore said: "Born like the splendor of a summer flower, dead like the quiet beauty of autumn leaves", this sentence is most appropriate to put on Shiloh's body.
She knew that the end of her life was not far away, she knew the hardships and bitterness of life, but she still burned and shined like a candle. The final ending is not always good, but there are no regrets.
Hilo's story reminds me of the Olympic athletes who fought on the Paralympic games a while ago.
Swimmer Zheng Tao, because of the loss of his arms, had to rely on his teeth to bite the towel at the start of the race, and when he reached the end, he had to rely on his head to hit the pool wall to declare victory; ice hockey player Shen Yifeng, who lost his legs in a car accident when he was a child, is now sitting in a wheelchair to win glory for the motherland.
Every person with a disability has the potential to experience such a moment, and many people will tell you with sympathetic eyes: from the moment of disability, your life is over.
But Hilo and these Paralympic athletes have proved with their own actions that our lives are not over, and our lives can still shine.
Zang Kejia once said: "Some people are alive, he is already dead; some people are dead, he is still alive." Although Hilo's body is dead, her optimistic face to life and never admit defeat remains in people's hearts forever.
Reference sources
[1] Mermaid syndrome
[2] The Story of Shiloh Payne
![The quadruplets "Bingqing Yujie" were admitted to the same university and lived in a dormitory, and now the second child is a "mermaid"[fig]](data:image/gif;base64,R0lGODlhAQABAIAAAP///wAAACwAAAAAAQABAAACAkQBADs=)