Zhang Huimin is seen lying on her bed.
A family in Zhejiang whose daughter is suffering from a rare disease called Mucopolysaccharidosis has recently turned to the media to seek help for treatments, Tencent News reported.
Zhang Huimin, 17 years old, measures a mere 80cm in height and has difficulties moving her body, which has developed obvious signs of deformity.
Zhang is about as tall as a two-year-old boy.
When Zhang was three years old, her mother Huang Chunzhao noticed that she often stumbled while walking. Huang took her to hospital for an examination, but the hospital in the local town couldn’t diagnose her.
Zhang saw doctors in Shanghai, Hangzhou and Wenzhou to find treatment, but none were able to properly diagnose her condition.
When Zhang was 10, she suffered a big fall and was unable to stand on her own afterwards. She eventually had to drop out of school and stay at home.
“Because of my poor health conditions, I began schooling at nine and only finished primary one lessons,” Zhang told reporters.
Expensive medical fees have taken a hard toll on the family. Huang is a tailor and her husband carries cargo to make a living. They both make less than 30,000 yuan per year.
“It’s been very tough. We’ve borrowed money from all of our relatives and friends. As we couldn’t find the cause after having been to so many places, I finally decided to stay home to take care of her,” Huang said.
Last year, with the help of a local health association, Huang took her daughter to a hospital in Shanghai. There, doctors diagnosed the girl’s disease as Mucopolysaccharidosis.
Zhang rests after just taking a few bites of her meal.
“Only one out of 100,000 people gets this disease,” Huang said. “The doctors said there is a medicine made in America that can treat it, but they are not able to get the medicine.”
Huang said she’ll never give up helping her daughter.
Huang feeds her daughter.
While speaking to reporters with a pen and paper in hand, Zhang said, “I long to practice writing, but my hands have no power at all.”
Zhang uses her mouth to turn a page of her book.
Huang told reporters that although Zhang looks like a child, her intelligence is no different from other people her age.
“She’s got good memory. Often times, she can tell me any story after reading it only once from her storybook.”
Zhang teaches her mother how to send a text message.
Zhang loves reading. She often asks her brother to download e-books for her. She spends most of her time either reading her e-books or watching her mother make clothes at home.
Customers take their clothes and leave money with Zhang when her mom is out.
Huang said Zhang is so weak that she needs to be taken care of constantly and carefully. Huang normally gets up at 9:00 p.m., 12: 00 a.m. and 2:00 a.m. to help her daughter go to the bathroom.
“I believe in miracles. Many doctors said she wouldn’t be able to survive past 10 years, but she’s 17 years old now. My whole family hopes she can live longer,” Huang said.
A neighbor watches over Zhang as her mother goes to buy fabric.
Huang has tried several times to search for the necessary medicine but to no avail. She told reporters that she hopes anyone who has information about the medication would let her know and help her daughter. She wrote down her cell phone number for reporters.
By Lucy Liu
[Images via Tencent]