Twin sisters transforming lives

Twin sisters with spinal muscular atrophy overcome challenges, pursue a passion for literature, and open a library to inspire others and advocate for rare disease awareness, Li Xinran reports.

Rare Disease Day is observed on the final day of February each year. According to the World Health Organization, rare diseases are conditions that affect between 0.065 percent to 0.1 percent of the population. Many of these diseases are congenital, chronic, and often life-threatening.

Zhao Wenjing and Zhao Yajing, both 27 years old, are twin sisters. They are patients with a rare disease known as spinal muscular atrophy, or SMA, which is a progressive autosomal recessive genetic disease. Patients typically experience muscle weakness and often develop scoliosis.

However, it wasn't until last year that the twins were officially diagnosed with SMA through genetic testing. Their previous diagnosis, in 2000, was said to be neuronal motor injury.

Despite both having the same disease, the twins' situations differ slightly from each other. Zhao Yajing's condition is more severe, as she often experiences shortness of breath. This is why Zhao Wenjing, the elder of the twins, usually acts as the spokesperson.

The twins have always been thankful to have each other. "The only person who can truly empathize with me is my twin sister. Having someone who's the same age as you and understands what you're going through to talk to is incredibly beneficial for mental health," said Zhao Wenjing.

Due to their SMA, the twins only attended school full-time during second grade for one year. However, they didn't perceive this as a significant loss. "Since we had each other as study buddies, it wasn't lonely," said Zhao Wenjing.

The twins' father is both their academic adviser and overall consultant. He encouraged their interest in reading and traveling. "Our father believed that reading and experiencing the world were more important than mere grades," explained Zhao Wenjing.

From 2017 to 2019, the family of four embarked on multiple trips across China, spanning from the Xinjiang Uygur autonomous region to Macao. Given the challenges that SMA patients face during long trips, their vehicle was modified so that the twins could lie down and take naps from time to time.

"Through these travels, we have realized that reading and traveling are equally important. Reading stimulates thinking while we're on the road. It's like bringing questions to the trips," said Zhao Wenjing.

Reading also helped the twins uncover their passion for literature and guided them toward their career paths.

"Over the years, we have translated numerous articles and books, written lyrics and scripts for children's stage plays. Moreover, we have developed and enriched our spiritual world through reading," said Zhao Wenjing.

During the family's trips, they distributed books to children living in rural areas, hoping to share their love for reading.

"However, we felt it wasn't enough and we wanted to do more and do it better," said Zhao Wenjing.

Inspired by their father, the twins had been thinking about opening their own library for several years. "We were hoping that visitors could discover their true passions and life goals through reading," said Zhao Wenjing. "Unlike algorithms and big data, which only provide information that you've shown interest in or have searched for before, books serve as neutral zones to me, and libraries stand as places with the fewest information barriers. When you step into a library, books on any topic, whether you've explored them before or not, are all there."

Recently, the twins decided to put their plan into action, transforming their living room into a mini-library. They sketched a basic design for the bookshelf they desired, and a carpenter brought their vision to life.

"It's a 6 by 2-meter L-shaped bookshelf capable of holding 3,000 to 4,000 books," said Zhao Yajing.

The twins are currently expanding their book collection, having recently acquired new volumes such as the Percy Jackson series by US author Rick Riordan and works by Japanese writer Higashino Keigo. "Personally, we enjoy detective novels and foreign literature, so these types of books constitute a significant portion of our inventory," said Zhao Wenjing.

"But we possess only a few domestic works from the past two decades, so we're looking to bring in more of these books."

The twins plan to officially open the library in late spring. Due to limited space, they are going to adopt an appointment system.

"Our intended guests include fellow SMA patients and potentially a small portion of our social media followers," said Zhao Wenjing.

Two years ago, the twins' father passed away and they have been carrying on with his words and memories. "Living with SMA hasn't been easy. But, fortunately, we have each other and parents who always support our endeavors without question," said Zhao Wenjing. "Our family and those who have helped us along the way are like firewood, lighting up the path for us to get here. We hope to pass this hope on to others."

For the twins, Rare Disease Day is about informing the public that people with rare diseases are more than just "patients" — they deserve to voice their thoughts and discover their purpose in life.

"Just like healthy people, we have rich perspectives and high aspirations. We, too, have careers and dreams that we want to pursue. We're different, yet the same," said Zhao Wenjing.

Contact the writer at lixinran@i21st.cn