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ALS patient, 29, tackles peaks

By Xin Wen | China Daily | Updated: 2018-09-03 09:15
Zhang Wei climbs the Mount Tai in Shandong province on June 17, 2018. [Photo/IC]

Zhang Wei has climbed two of China's Five Great Mountains on his hands

Editor's note: It is estimated that about 200,000 people in China have Lou Gehrig's disease, which is also known as amyotrophic lateral sclerosis, or ALS. China Daily interviewed patients and their families to learn about their lives under the shadow of the disease and their struggles to pursue their dreams.

When Zhang Wei was 7 years old, he was told he would not live past 18.

Yet in July, on his 29th birthday, Zhang, who has an advanced form of Lou Gehrig's disease, climbed on his hands to the peak of Shaanxi province's Huashan Mountain in 22 hours.

He now plans to climb the Great Wall during the National Day holiday in October as he continues to defy the disease, which slowly takes away a person's ability to walk, sit up, swallow food and eventually breathe.

The condition - also known as amyotrophic lateral sclerosis, or ALS - was named after the New York Yankees baseball player who, in the 1930s, was one of the first people diagnosed with it.

"I've been told that staying alive is a miracle for me," Zhang said. "But as I become older, I believe that more miracles will happen to me."

Zhang lost the use of his legs when he was 7, almost the same time he dropped out of primary school. He was diagnosed as having Lou Gehrig's disease five years later.

After his diagnosis, he started traveling the country, spending months on the road every year. He survived by begging or receiving assistance from generous people.

That's how he met Meng Mian, 50, a native of Xi'an, Shaanxi province, who came across him in the city's railway station in October. She had read about Zhang in information shared on social media.

Meng, a married mother-of-one, took Zhang in and offered to support him, providing food, nutritional supplements and medicines. She helps care for him by raising money from her friends.

Zhang long dreamed of conquering China's Five Great Mountains - Shaanxi's Huashan Mountain, Taishan Mountain in Shandong province, Hengshan Mountain in Hunan province, Hengshan Mountain in Shanxi province, and Songshan Mountain in Henan province - but because of his condition and living situation, it was not possible.

Now, he has checked two of the peaks off the list. He climbed Taishan Mountain on June 21, receiving support from Meng, as he did on Huashan Mountain, and has set his sights on scaling the other three, as well as the Great Wall, before he turns 30.

"I'm still breathing. I hope to complete my dream when I can still move," said Zhang, who is 1.75 meters tall but weighs only 25 kilograms. He is among an estimated 200,000 people with ALS in China.

The muscular atrophy that is part of his condition means he needs to expend three times the effort of an able-bodied person to climb one stone step on a mountain. He climbs using his weakened arms, plotting his next move carefully, and every step he conquers uses up almost all his strength.

Fainting is part of his everyday life, and he passed out several times on his climb to the north peak of Huashan Mountain last month. He reached the top in the early morning, 22 hours after beginning his ascent.

Even though doctors say he has not got long to live, Zhang said he is still full of hope.

Zhang's parents got divorced when he was 6 months old and he was raised by his grandparents in a small village in Heze, a city in Shandong. His grandfather died when he was 9, and his grandmother, who developed serious diabetes, died when he was 19.

He has spent most of the past 10 years living off the kindness of relatives and the strangers he met on his travels. That was until he met Meng, who has now provided Zhang with a stable living situation, even though she only earns about 2,000 yuan ($290) a month working in a supermarket.

The cruelest part about ALS is that it does not affect the patient's thoughts or perceptions, which means Zhang knows exactly what is happening to his body and what fate awaits him.

"If I stay inactive for more than an hour, I feel like falling asleep," he said.

But he keeps exercising every day with a view to achieving his next climbing goal. "I seldom keep still at home, even though I feel very tired if I move my body," Zhang said, adding that he is excited about his plan to climb the Great Wall next month, on his fifth visit to Beijing.

However, his body is showing warning signals. At a hospital examination last year, he was told his body functions are degenerating and that he is unlikely to live past 30.

"I was warned once before, but I survived," Zhang said. "Now I believe miracles can happen."

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