This is the story of Betty, a chinese mother able to turn her suffering for her and her child disease into something precious for a lot of people. It has been translated by an article published on the Shenzhen Evening News (click here for the original link).

In spite of her disability, Betty has always led an ordinary life. The school, the job, the love, the marriage and then the arrival of a child, that little messed up her “boring and happy” life. Just the usual run of things until the night her baby falls down and she realizes he has inherited her own pathology: the Charcot-Marie-Tooth disease type 2A.

Suddenly everything becomes grey. For Betty is a pretty big blow but, luckily, she is not alone: close to her, there is her family urging her to be strong and to trust the search for a treatment for her disease and that of her child.

Betty begins learning about the CMT and little by little becomes an expert on the subject. She starts being active in the groups of patients, answering to their questions and those of their relatives, guiding them to the right medical care and toward the acceptance of their disease.

She goes to Beijing twice to take part in the Rare Disease Day, then it hosts in her own town the first National Day of the exchanges between physicians and patients on the CMT, promoting the cooperation and the genetic search. In May of this year, the five offices and commissions, jointly announce the inclusion of the Charcot-Marie-Tooth in the first list of rare diseases of the country.

As soon as news is announced, Betty, well aware of the fact patients have to have a legal identity to be recognized by society, it begins all the practices to create the first institution of public utility on the Charcot-Marie-Tooth: CMT China which is officially born on July 25, 2018.