Frozen life

Born in 1993, Xiang had a happy family before she received her myotonic dystrophy diagnosis.

From then on, Xiang's mother became her full-time caregiver. Her father is a construction worker.

Due to health issues, Xiang quit school in 2011 and she started to find jobs online such as consumer services to help ease the family burden.

"My parents' love supports me to live every day to the fullest," Xiang says, adding that she has studied playing instruments, like the ukelele and electric organ, by herself and taken up craft hobbies, including cross-stitch and doll-making.

Inspired by a hearing-impaired woman who livestreams her life, Xiang began to livestream her making clay dolls in 2016.

As her skills improved, many followers commented that they wanted to buy her dolls. Her hobby helps her make a living and last year, at peak season, she made more than 20 dolls.

"My body cannot move, but my dolls can take my soul to experience the world," Xiang says.

She can get thousands of yuan every month from her doll business, which has built her confidence and allows her to make a contribution to the family.

But Xiang realizes that one day she will not be able to make dolls. She wants to pass her skills to others like her. Last year, she started to teach doll-making online.

In February, due to pulmonary hypertension, Xiang was hospitalized for surgery. To prepare for the worst, she even recorded a video to donate her body if she could not make it.

After a two-week hospitalization, Xiang was finally back home, but using a ventilator is "a new normal", she says.

In the future, she may need a series of medical equipment to help her cope with coughing.

"Before I have to stay in bed all day, maybe in two years, I will enjoy every day, not be afraid of tomorrow," Xiang says in a WeChat post.