Jiao Fei was born in a small town in central China’s Henan province; he and his elder brother both suffer from Parkinson’s disease. Now they live in their parents’ home which was built 30 years ago.
Jiao is the youngest reported patient in China who showed Parkinson’s disaster symptom under the age of 10, and is the world’s fourth case of Young-onset Parkinson’s disease in this age group.
When Parkinson’s disease (PD) symptom emerged, he started to worry about becoming a person who has no ability to take care of himself, just likes his brother and he said his illness is a heavy blow which broke his dream of “becoming a soldier”.
Jiao was so proud that he couldn’t accept the fact that people know about his disability and frailty. In his village, few people know about his condition, because he never talks about it.
Since entering the third grade in school, Jiao’s condition got worse, but he tried to hide it. One day in school, he started shaking and fell down. He couldn’t stand up again because he lost balance. He was anxious and said in mind: “It is over, they found my disease.”
The PD also causes bradykinesia, so he moves slowly. To keep others from knowing his health condition, Jiao had to leave home two hours earlier to complete the 10-minute walk to school; he hated people to see his heavy and rigid body, so after school, he went home after all students had gone.
Jiao only told his condition to a few trusted friends. Most people from the village only know Jiao brothers are not healthy, but don’t know that they are suffering from a rare disease.
Side-effect from his medicine had stressed him for years, subsequently Jiao quit school when he was in high school. He “envied” his friends who were able to study and had opportunity to join the army.
After leaving school, Jiao does some farm work and takes care of his brother after work. Both his parents go outside to earn money to pay off the family’s debt and Jiao brothers’ expensive medical expenses.
Three years ago, Jiao had a Deep Brian Stimulation (DBS) implantation surgery in Xi’an. The battery-operated medical device which can block the abnormal nerve signals that cause PD symptoms was implanted into his right chest. After the surgery he stopped taking medicine at night.
Jiao said he cherishes every day and hopes to be joyous every day. Although he is tortured by his illness and his brain is controlled by a machine, he believes he can beat the disease.
In recent years, Jiao has met a group of PD friends on the Internet, and he gains their trust because his honest and simple personality. With these friends’ supports, he opens an online shop to sell the local products of his hometown, but the business is not good. He still hopes he could have a job to support himself.
At the end of this October, Jiao attended a national Parkinson’s disease wardmate conference in Shanghai as one of the organizers. He was well prepared for the event, and his elaborate proposal for the event also helped the organization get sponsorship.
Jiao wishes he could continue to participate in the work for the public good. He said the so-called destiny is kidding him, but he wants to say no to it.