"If there is no sun, turn to the stars; if you can't be seen, sing louder; keep believing, like me, in the power of love..."

These are the lyrics of a song by a rock band comprised of people in wheelchair, people with albinism, and people of short stature or unusually tall. Meet the 8772 band - a group of charming musicians who are persons with rare diseases or different kinds of disabilities.

On February 27, 2021, 8772 kicked the ball at a charity event on the eve of the 14th International Rare Disease Day. The eight amateur musicians were all born in the 1980s and 1990s and only perform at charity events. In real life, they all have jobs but meet on Wednesday nights for rehearsals in Beijing, which sharpen their music skills.

"What we want to show the public through our music is that being person with a rare disease or disability is not the end of the road. We can also make our voices heard in our own way," Su Jiayu, the band leader, told ChinAfrica. The young man with Marfan syndrome, a rare genetic disease with the characteristics of thinness and tallness. To these happy musicians, the most important thing is gaining visibility and changing the way others look at them.

A vehicle for emancipation

In 2015, the two founders of the band, Wang Yiou and Cui Ying, who have osteogenesis imperfecta or brittle bone disease, realized that there was no Chinese band representing people like them. So they formed 8772. The name of the band is a numerical transposition of Chinese term bingtong tiaozhan, meaning "challenging diseases."

The team crystalized from a meeting of young people from different backgrounds, all with various disabilities or illnesses, but with a shared desire to express themselves through music. None of them had had experience of composing a song or known how to play an instrument professionally, but that didn't hamper their ambition. Ma Ge, a genius guitarist of the famous Sky band, was moved by their performance at a charity event. He decided to coach the young group to reach a better level.

On August 14, 2019, the 8772 band released their debut album Never Rare, consisting of 10 original songs. At their concert at Jiangjinjiu, a live house in Beijing, they performed for about 300 people. "It was the first time we played on stage in such a prestigious venue. The feeling was just amazing," Su recalled with glittering eyes.

Most of the songs of the album were written by the band members themselves. Their second album is scheduled to be released this autumn.

The last five years have been marked by dozens of colorful performances. Cui still vividly remembers the beautiful evening of the very first performance of the band in rural Anhui Province. Her first line in the song echoed into the night: "I would like to sit on the grass with my friends and look up at the sky and count the stars." She then asked the audience: "Can you light up a star for me?" One by one, the smartphone lights came on, creating a scene of a starry sky. "It really moved me" she recalled.

One day when the show was over and everyone had left, a university student with cerebral palsy stayed on and exclaimed in amazement, "I always thought that the illness meant an end to life and that there was no way one could leave a mark on the world." Then he turned to the band members with a smile and continued, "You give meaning to our lives."

Beyond music

Apart from music, each band member leads a regular life.

Su, Cui and Wang all work for the Illness Challenge Foundation in Beijing. The foundation's mission is to raise awareness in society to support people with rare diseases in China. Wang is the secretary general of the foundation and also the founder of the China-Dolls Center for Rare Disorders, an association that aims to raise awareness about brittle bone disease.

Cheng Liting, guitarist in the band, who has polio, has set up an online shop selling her own clothing brand. She studied English and design to become financially independent. When Beijing enacted a law in 2010 on C5 driving licenses for people with disabilities, she was one of the first to get her license. Since then, she has been completely independent in her travel both for work and band rehearsals. "I look pretty meek on the surface but in reality, I love to take on challenges. "Skydiving, scuba diving, roller coasters - nothing is off limits for this thrill-seeker.

Cheng hopes to be seen as "an ambitious and loving person like everyone else and not be reduced to the label of a sick person." Actually, the only thing that sets her apart from others is her wheelchair.

There are nearly 8,000 known rare diseases in the world, affecting about 20 million people in China. In Cui's opinion, the government is doing a lot to support them. In 2018, the first catalogue of rare diseases was published. In 2019, China approved eight new drugs for genetic diseases and continues to accelerate approvals. "Awareness has been raised in society through joint efforts in this area. Of course, this is just the beginning. Overall, the society is gradually improving, and this is very encouraging," Cui told ChinAfrica.

As for the future of the band, "I would like us to continue playing together for as long as possible. It's great to be able to unite through music and support each other," Su said. They are grateful for the opportunity that the band gives them, which allows them to release any stress or emotion they accumulate throughout a week.

"For my part, I hope we will organize a tour to spread the liberating power of music and support more people with similar problems," Cui said with a smile. CA

(Print Edition Title: Triumphant Tone)

Comments to glj@chinafrica.cn