ecns [expanded by feedex.net]: ALS sufferer embraces motherhood

ecns [expanded by feedex.net]

ecns

ALS sufferer embraces motherhood
http://www.ecns.cn/2012/12-14/40626.shtml
Dec 14th 2012, 07:56

















2012-12-14 16:56 Xinhua     Web Editor: Gu Liping
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Lyu Yuanfang considers herself a lucky woman. Although she's confined to her bed most of the time, she has been all smiles since discovering she is pregnant.


"The baby will make our family complete like all other families. This is the happiest thing I can think of," said 31-year-old Lyu in her parent's apartment in Lanzhou, capital of northwest China's Gansu province.


She is six months pregnant and expects to give birth sometime next month.


"It'll probably be a premature delivery. My doctors suggested I should get a Cesarean section after the fetus is 32 weeks old, in case my health worsens and threatens the baby."


She is planning to give birth at Beijing's Union Hospital, one of the best hospitals in China.


The good-looking, bespectacled woman has been bedridden since childhood, when she was diagnosed with Lou Gehrig's disease, also known as amyotrophic lateral sclerosis or ALS, which is rapidly progressive and invariably fatal.


ALS strikes one to three people out of every 100,000. Patients progressively lose muscle strength, eventually becoming paralyzed and unable to speak, move, swallow or breathe. British scientist Stephen Hawking is one of the more famous people with the disease.


Lyu's parents felt her existence was a miracle and never expected her to get married and live like an ordinary person.


Her fate changed, however, in 2008, the year she learned to use a computer. With a few clicks of the mouse, Lyu came to know many friends who were in the same boat.


"I joined an online group for ALS patients and we found warmth and comfort in one another," she said. The illness is named after famed U.S. baseball player Lou Gehrig, who died from the disease in 1941.


Lyu was happy to find that she was not alone. She used her time online to chat with friends, as well as learn basic word processing and photo editing skills.


In October 2009, she met a man named Luo Zhongmu in an online chatroom. Luo was not an ALS patient, but had visited the website to seek help with photo editing. After receiving help from Lyu, the pair began chatting more frequently and soon became familiar with each other.


Luo, 39, is a native of south China's Guangxi Zhuang autonomous region. When he met Lyu, he was working at a chemical plant in Hangzhou, capital of east China's Zhejiang province.


He said he was impressed by Lyu's optimism. "Despite her ailment, she's always kind and cheerful."


At the end of 2009, Luo told her he was in love with her. Lyu, however, refused his affections at first. "I don't want to be a burden to him. My parents are already overwhelmed with me and my younger brother, who also suffers from Lou Gehrig's disease."


But Luo was not disheartened. In February 2010, he bought a train ticket to Lanzhou and spent the Chinese New Year holiday with Lyu and her parents.


He arrived on Valentine's Day, hoping to start a romance that would later change her life.


At the end of his two-week stay, Luo proposed to Lyu, despite objections from her parents, who feared he might one day regret his decision.


Luo came back to Lanzhou two months later to marry Lyu. He found a blue-collar job at a warehouse and spent all his wages on Lyu's treatment.


A year after they were married, Lyu was determined to have a child.


"Many of my online friends had died from ALS. I felt it was important to have a child to keep Luo company when I die," she said.


When Lyu was 12 weeks pregnant, she took a DNA test that included amniocentesis, a process in which doctors test the fluid surrounding the fetus to determine whether the ALS gene can be passed on to the child.


The test results were negative and subsequent prenatal checks indicated the fetus was healthy.


China has about 200,000 ALS patients. Since treatment is expensive and not covered by most social welfare programs, many are forced to forego care.


Last month, the China Soong Ching Ling Foundation, a non-governmental charity organization named after the wife of Dr. Sun Yatsen, established a special fund to help ALS patients. The fund received 1.7 million yuan in donations on its first day.


The couple said they were ready to accept whatever hardship they might suffer together. They had only 3,000 yuan (480 U.S. dollars) in savings and delivering the child would cost at least 10 times as much.


Lyu's father is half-blind and her mother earns just 500 yuan a month as a janitor. Lyu has two younger brothers, one of whom suffers from ALS just like her. Her other brother is still in junior high school.


"Life won't be easy," said Luo. "I know her health might deteriorate and she may die someday. But I won't regret anything, because the happy time we spend together now will be worth the hardship."












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