Juvenile Parkinsonism - CuiNan Photo

Jiao Fei’s hometown is 1200 kilometers away from the coast. Unfortunately, Jiao Fei and his brother, who is six years older than him, both suffer from Juvenile Parkinson disease. Parkinson disease itself is not that strange, however, it is rare for children. Jiao Fei was just about ten years old when he was first found with the disease. It was the first case of Juvenile Parkinson disease in China with record, and the fourth among very young children in the world.

Juvenile Parkinson disease, as a kind of rare disease of Parkinson, is different from the one found with adults. It is commonly found among children or teenagers, which is just 10% of all the patients of Parkinson Disease. Therefore, it is recognized as a kind of rare disease by the World Organization for Rare Disorders. Because of the tremor of the muscle, patients often call themselves “robots”.

If it is not for the dark red scar on his right chest and the obvious swelling part caused by the battery of the brain pacemaker, it would be hard to believe that this strong young man has been tortured by Juvenile Parkinson disease for over ten years.

Although it has been reported by several media, very few people know about the two brothers’ disease. Jiao Fei never mentioned it to other villagers because of the bias people hold in countryside.

At present, to pay for the medical expense of more than 1000 yuan per month, and to pay back the debt for the newly built house, Jiao Fei’s father has to work at the coal mine. His mother does some cooking for people in town to help support the family. Jiao Fei had tried to work in Xi’an with the help of another patient, but had to give up due to his disease.

Now, Jiao Fei’s biggest wish is to find a job, through which he can make a living. He also wishes he can help to support his family, and give some hopes to his terribly fatigued parents.

At the new year’s eve 20 years ago, Jiao Fei was born in a village in the west of Henan, China. The same as his brother who is 6 years older than him, it was in his childhood that Jiao Fei was first found with the disease, which was finally diagnosed as Juvenile Parkinson Disease several years later. With the help from society, a brain pacemaker was placed in his brain successfully three years ago. It helped control the development of the disease temporarily. However, the battery and the operation left obvious mark on his chest.

Because of the electrode in his head, he often feels uneasy as if his fate was controlled by something and he is living under shadow of it. He often calls himself “a man whose life is in the charge of a machine”.

Jiao Fei’s family is not rich. Therefore, he often does not take the medicine according to the instruction in order to save some money. Then his muscles would become obviously rigid, and begin to tremble constantly.

In his village.

Jiao Fei went to visit one of his cousins who lived with his grandparents during the Mid-autumn Festival. Also because of his disease, Jiao Fei’s family seldom has connections with relatives. Except for visiting his grandparents, he can only see his cousins when they come back to the village from schools in town during vacations.

He often feel pressure, because his diease were never be known by the people in the village.

Besides doing some farm work, Jiao Fei helps his mother take care of his brother as well, who has the same disease.

In order to make the money for medicine, Jiao Fei’s mother travels between the town and the village to do some cooking for other people. During work breaks, she has to hurry home to take care of her elder son who can just stay in bed for years.

The drugs made him drowsy

Meanwhile, Jiao Fei is often disturbed by the disorder of his endocrine system, which is caused by vegetative nerve functional disturbance. The most distinct consequence is the dental ulcer, and the ulcer sometimes makes his lips swollen.

With his elder brother.

Having suffered from the disease, Jiao Fei never had any chance to travel even around his hometown. When he finally made a trip to the place which was used to be a famous tourist resort, he could do nothing but imagine how fantastic the place once was through his friend’s description and the deserted surroundings.

He hopes he can walk out of the mountain from his small village and work like other normal people. He believes that he is as good as anyone, even better than someone. He also thinks that this is the only way through which he can bring hopes to his family.

Jiao Fei is waiting for a photo to be taken for him in front of the Bund in Shanghai. Behind him is the most prosperous business area in China. Although he has been to many big cities in China, they are still strange to him. He hopes that some day in the future, he can find a job to support himself. Also he dreams of becoming a part of a big city.

He hopes to live a happy life every day and value what he owns now. He do not want to worry about trivial things, and be tortured by the disease. He says that although his brain is controlled by a battery and two electrodes, his mind belongs to himself. He wishes he can control the evil inside his body, just like what he can do about this naughty rock.