Strong heart triumphs over delicate-bone condition

TIANJIN — Wei Ruihong's struggles began a mere 28 days after her birth when she suffered her first fracture, and by the time she was 43, she had endured a staggering total of 31 fractures. With a rare genetic disease known as osteogenesis imperfecta, which renders her bones as fragile as glass, Wei, standing just 1.2 meters tall, has forged a resilient life that radiates with a brilliance akin to diamonds.

Surmounting numerous challenges, she completed the self-taught higher education examinations within a year and a half. Not stopping there, Wei authored two books, extended her support to thousands of families affected by rare diseases, and shared her optimistic and positive outlook on life with tens of thousands of individuals through psychological counseling.

"Just 28 days after my birth, I fractured my left arm, and soon I was diagnosed with osteogenesis imperfecta, often referred to as a'porcelain doll' condition," says Wei, from Guangping county, Hebei province.

Doctors initially predicted that Wei's life expectancy would be a mere 11 or 12 years. They went so far as to suggest that her family should consider giving up.

"My grandfather was filled with fury upon hearing that. He said that his beloved granddaughter deserved to receive proper care and attention," she recalls.

Reflecting on her struggles, Wei described how pain permeated her childhood. She remembers a particular incident when she was just 5 years old. "I tried to break a baked wheat cake, but to my dismay, my thumb ended up breaking along with it," she recalls.

The pain that sounds tormenting is actually the easiest kind of difficulty faced by people with such conditions. Because of limited mobility, physical fragility and stigma, many patients can only stay at home.

"My family has always made me believe that I am not defined by my illness. They have treated me like any other child except that I was short and unable to walk," Wei says. "My mother sent me to school and told me to listen to the teachers attentively, while my grandfather always took me to the theater and greeted everyone he met with enthusiasm."

Wei says that during her time as a student, she was fortunate to have encountered no discrimination from her classmates. She ranked top in the senior middle school entrance exam. "But I had to drop out of school due to physical limitations, which came as a significant blow," Wei says, adding that she found herself crying every day.

One transformative moment came when Wei's schoolteacher paid her a visit. She brought a basin of water and imparted a profound piece of advice. "'Shed all your tears today, then wash your face and reflect on how to navigate your future.' My teacher told me tears would only cloud my vision and prevent me from seeing the path ahead," Wei says.

Wei completed all 16 courses and earned a college diploma in psychology, and acquired qualification certificates, as a national psychological counselor.

"Once, I forgot to notify the exam authorities in advance, and no tables and chairs tailored to my height were arranged. I improvised by placing my bag filled with books and sat on it, which allowed me to write comfortably," she says.

"This incident struck a chord with me and I felt it mirrors my life. Being ill and physically challenged does not mean I am incapable. I must rise on my tiptoes to achieve my goals."

Wei then moved to Beijing to offer counseling services to patients at the China-Dolls Center for Rare Disorders. "My own experience with illness made me more empathetic, and my phone has become a psychological hotline. Even normal people reach out to me to seek guidance," Wei says.

In 2012, Wei completed a 150,000-word autobiography. The following year she joined the department of osteogenesis imperfecta at a hospital in Tianjin, and established the Sunshine Counseling Center for Rare Disorders to help more people. To promote employment opportunities for this special group, the center has introduced various courses, specializing in areas such as social work and psychology. It also regularly organizes handicraft classes and charity sales.

"Those with disabilities ... possess the potential to be a source of inspiration for others," she says.

Xinhua