In a group, the most likely to be noticed is the kind of person who is "different".
This "difference" can be large or small, a different regional accent, a different appearance, or a rare disease.
In the face of this special, inclusive and exclusionary, smiling and cold eyes, encouragement and ridicule, every choice you make will have a decisive impact on the lives of others.
And patients with Little Fat Willie syndrome, they can overcome the pain caused by the disease, but they can't stop others from criticizing.
The author appeals to treat every patient with Chubby Willie syndrome around you, who faces an unknown pressure far heavier than we can imagine.
30 ml of milk powder needs to be fed for three or four hours
In 2011, Haohao (pseudonym) in Anhui Province was born with hypotonia and was subsequently hospitalized at the Shanghai Children's Medical Center. In half a month, the doctor did not check Hao Hao's little fat Willy syndrome, and preferred Hao Hao's disease to be a manifestation of cerebral paralysis.
After being discharged from the hospital, Haohao's mother took care of her child's living with all her heart.
Feeding Hao Hao milk powder is a chore, using 30 ml of milk powder to brew a bottle of milk for him, Hao Hao can not suck, his mother can only feed drop by drop into his mouth. This process can last for three or four hours, and Haohao's mother has paid perseverance and patience.
In the neonatal period, Hao Hao can be said to have been "given a second life" by his mother. The upside-down day and night and the disorderly schedule made Haohao's mother aggravate the dark circles and lose more hair. The heavy pressure made her often have a hundred thoughts, for the sake of the child, she still chose to face tomorrow positively after crying.
Haohao's illness still needs to be cured!
Since the doctor diagnosed Haohao's disease as cerebral palsy, he took him to rehabilitation and injected with neurotrophic injections. There are also various related acupuncture therapies, and Haohao's mother looks at the needle eyes on the child's body, and she is distressed and uncomfortable.
"I'm not willing to give up on this child." Haohao's mother was also persuaded by the people around her to give up, and there was no need to waste effort on this kind of disease that could not be cured. Her heart struggled, she hesitated, and she finally chose to carry the burden.
Hao Hao experienced overeating after the age of two, and at first, Hao Hao's parents were still relieved. They wondered if feeding a struggling, thin child who suddenly became fond of food meant that his condition was getting better.
With an ever-expanding appetite and an uncontrollable temper, Haohao's parents felt that this was not the same as the brain paralysis. They went to a number of Shanghai hospitals, including Fudan Children's Medical Center, eager to get an accurate result.
Until the age of eight, Hao Hao was diagnosed with Chubby Willie syndrome in the hospital, overturning the previous misdiagnosis of cerebral paralysis. Misdiagnosis of rare diseases is more common in mainland China. Sadly, misdiagnosis represents a lot of time, money, and energy that a family has to put in, but in the end it becomes a bamboo basket to draw water.
When she learned that this was a rare genetic disease, Haohao's mother told reporters: "I cried for a week at the thought that genetic diseases are not curable. ”
After a big cry, Haohao's mother regained her confidence and rekindled the courage to live. She wants to be the pillar of the child and the "guardian" of the child.
Chubby Willie patients are ostracized at school
"Children are being complained about every day, by parents, by teachers." Hao hao's mother confided in the problems faced by eleven-year-old Hao Hao, who was under great pressure in a normal school.
In the eyes of other parents, they will directly classify Haohao as "your children are spoiled", and the children's behavior habits must be that parents teach no way. Through the contact of the mobile phone, Haohao's mother had planned to explain the little fat Willy syndrome to them, but this explanation was not understood at all, but was felt to be making excuses for the child.
Little Fat Willy syndrome is the root cause of Haohao's abnormal behavior, knowing that there is such a child in the class, the general parent's practice will only tell their children to alienate Haohao.
To complain about Haohao's illness is to be rejected by others. If you don't say it, you can't solve the "knot". This contradiction makes people helpless.
The school's homeroom teacher communicated with Haohao's mother by phone for three days, informing her of Haohao's performance in school and causing trouble for other students.
"Maybe Hao Hao is not suitable for school life!" Although the class teacher's words were more euphemistic, Haohao's mother still understood the other party's advice and hoped that Haohao would "withdraw from school".
The negative attitude of the school and the prejudice of the parents of the students directly or indirectly affect the attitude of the students towards Haohao. Hao Hao was overly bullied at school, and was deliberately teased by his classmates in the toilet, and afterwards the teacher suggested that the parents of both sides communicate and solve it by themselves.
School bullying, horror!
"I hope that children can have a normal, harmonious and unbeaten campus environment." Haohao's mother is exhausted, and when she hears Haohao come home and tells what happened at school, she has infinite heartache. For countless days, she washed her face with tears, and for countless late nights, she tossed and turned, and it was difficult to sleep.
She has also made countless efforts, at home she taught Hao Hao to learn, corrected his eating habits, all of which contained endless expectations as a mother.
The family of Little Fat Willie syndrome has to face a more cruel reality: the path they take, most people can't understand. There is a characteristic of human nature that those who are suspected of being "outliers" are often expelled by others, and this loneliness can only be felt by personal experience.
It's a protracted battle.
Haohao's mother once fell into severe anxiety and depression, and for countless days and nights, she slowly learned to change her mentality, reconcile with reality, and no longer torture herself.
Parents who are chubby Willie syndrome patients must accept this spiritual practice.
I received mental pressure from my relatives
Why does Hao Hao suffer from Chubby Willie Syndrome?
The doctor's answer was that 70 percent of chubby Willie's patients were caused by a deletion of a gene fragment in the region associated with the paternal chromosome 15. Most of them are small-probability events that occur by chance, rather than because of the physical reasons of the parents.
This rare genetic disease is a blind spot in the knowledge of many people. Those who have not received systematic knowledge of the medical profession will take it for granted that they will look for an explanation according to their knowledge level. As a result, there have been many differences between Haohao's parents, and the source lies in haohao's grandmother's gossip.
Haohao's grandmother made all kinds of speculations: "It is the woman who is inappropriate before marriage", "either she has a disease herself", in short, the cause of Haohao's illness is all blamed on Haohao's mother. This is an extremely irresponsible and inflamed act, allowing Haohao's mother to base herself on the whirlpool of public opinion and assume more malice.
A family that bears little fat Willie syndrome has already borne a lot of financial pressure. False rumors circulated by relatives and neighbors have pushed a family into the abyss of mental stress. Their mouths are fast for a moment, like a sharp knife piercing the heart of others.
After eating all kinds of bitter pains and going through all kinds of indescribable ups and downs, Haohao's mother learned to be strong and learned to make her heart tough. She exchanged WeChat with the parents of other chubby Willie patients, always patiently listening to them and cheering each other up.
In patients with Chubby Willie syndrome, their experiences are always different, and they have a lot in common. As parents, they want to be a big umbrella to shield their children from the wind and rain. And the bitterness of the patient's parents, who will understand it?
Do not know the suffering of others, do not speak evilly to each other.
We should warm this world with a kind heart!
[This article was first published in the public number: Pradwilly Information Network, the copyright belongs to Zhejiang Xiao fat Willy Rare Disease Care Center, reprint please indicate the source]