Hanoian with brittle bones chases travel dreams on his knees

Anh recalls reaching the foot of Dai Lanh lighthouse in the central province Phu Yen. In front of the wheelchair-bound man was a road clinging to the mountainside at the end of which were a set of steep stairs.

Undaunted, he got off his wheelchair, tied his usually unused knee protector over his jeans and began his ascent. After nearly one km of concrete road, he faces about 500 m of forest road and cliffs. His knees and hands burned with pain, but the thought of giving up did not strike him.

This happened seven years ago as he set out to conquer the Dai Lanh Cape, around 35 km from Tuy Hoa, the capital city of Phu Yen, to reach the "eastern pole," where the sun rises first in Vietnam.

The 34-year-old osteogenesis imperfecta patient was on a mission to conquer all four of Vietnam's poles and then the nation's highest peak, Fansipan.

After covering the 1.5 km distance to reach one of the poles, Anh could not move for days because his knees were badly injured.

Two months before his trip to the "east pole," he had been to the "south pole" at Ca Mau Cape in the Mekong Delta, which is also the easiest point to reach because he traveled by car and wheelchair.

More than a year later, he conquered the "north pole" – the Lung Cu flagpole in the northern mountainous province of Ha Giang. His most recent trip was to the west pole at the A Pa Chai Village in the northern province of Dien Bien. He had to climb 500 stairs to the west pole and nearly 400 to the north pole.

Vu Ngoc Anh used his knee to conquer Lung Cu flagpole in the northern mountainous province of Ha Giang in 2015. Photo courtesy of Vu Ngoc Anh.

His most challenging trip was to conquer Mount Fansipan in the resort town Sa Pa, considered the Roof of Indochina at a height of 3,143 meters (10,311 feet).

In 2011, he thought of climbing to the top of the mountain on his knees, a journey that could last up to seven days, but that proved unfeasible. In February 2016, after a cable car was put into operation taking tourists from Muong Hoa Valley to Fansipan, he was able to make his dream come true.

On his knees, Anh scaled the last 600 steps to conquer Fansipan. It took him an hour and 30 minutes, and the fabric tied for added protection to his knees tore in the effort. As he completed his climb, a prolonged cheer broke out and many people came up to congratulate him and shake his hands.

For each of his adventures, Anh’s takes into consideration his fragile condition and aims to complete the journey when he is still healthy enough for the challenges. He packs light – just a few clothes, a phone and a camera.

And despite all the precautions he takes, he has had many close shaves, including his wheelchair sliding downhill, being robbed and being teased by drunks. After each trip, he learnt new lessons about protecting himself.

"It sounds contradictory that a person with limited mobility wants to go to many places, but these journeys are a way for me to challenge myself, and to fulfill my dream of going to places I've seen on TV in my childhood," Anh said.

Fractured existence

At eight months old, Anh broke a hand and a leg for the first time as he learned to walk. Even before the wound healed, the bone broke again in the same place. When he was taken to hospital, doctors diagnosed him with the brittle bone disease and calcium deficiency. Osteogenesis imperfecta, known as brittle bone disease, is a group of genetic disorders that mainly affect the bones due to a lack of collagen and connective tissue.

A life of having bones broken very often was not easy. It was in high school that his bones broke the most, snapping at the slightest impact.

"I remember the days of lying in bed with my limbs wrapped in bandages, feeling like a mummy."

By the time he became an adult, Anh had lost count of the times his bones broke, but it is well in excess of 150. At times, he would suffer fractures on both legs... and he gradually learned to cling and walk on his knees, but he needed someone’s support for most of his activities.

After he finished secondary school, he was given a wheelchair by a non-profit organization, but he didn't use it until grade 12 because he was embarrassed by the gossip that it would trigger. But he eventually got used to it.

While he longed to run and dance like other people, he had to settle for making friends with books, stories and television sets.

When he was 18, he passed the university entrance exam in Hanoi, but the thought that his father would have to work hard to follow him to the capital and take care of him made him change his mind. He sacrificed his university dream and applied for a vocational school instead, aiming to develop his passion for business and music. Later, he opened a mobile phone and laptop repair shop.

At 21, he asked his parents to let him move from his hometown Hai Phong to Hanoi. At first, they did not agree, but eventually gave in on the condition he would call home twice or three times a day and that his father would check up on him every few weeks.

A new life

The move was not easy, because Anh had to learn to take care of himself, but he was determined to be as independent as possible.

He lives in a rented house with his cousins, using the first floor as his small office, working as the manager of a company that ships goods from abroad.

He frequents nearby markets to buy food and prepares his own meals in the kitchen. The need to limit movements means he rarely eats out.

Many people think that patients with brittle bone disease have to lead very restricted lives, sitting in one place, Anh said. He does not allow the disease to limit him, doing everything, only not doing vigorous exercises to avoid bone fractures.

When he goes outside, he uses his wheelchair, pushing it evenly and carefully with both hands. He always chooses public transportation services like buses, where kind people help him.

At home, he moves around on his knees.

After having his bones broken many times, his legs are not able to support his heavy body, Anh said, explaining his excessive dependence on his knees. This also means joint pains when the weather changes, he added.

Future dreams

Vu Ngoc Anh, who suffers from brittle bones disease, climbs the last stairs on his knees to reach the peak of Mount Fansipan. Photo courtesy of Vu Ngoc Anh.

Anh said he work to develop the "Vietnam Glass Bones" fund, a non-profit he has founded to provide career guidance to people with osteogenesis imperfecta and other disabilities. Anh has written books about his life and journey with the rare disease, and contributes money from their sales to the fund.

He is also working on a program to donate 1,000 wheelchairs to those in need.

When the Covid-19 restrictions are lifted, he also plans a project to play music as a DJ at popular tourist destinations, ensuring that he keeps pursuing his passion for music and traveling.

Anh has a passion and strong love for electronic dance music (EDM), inspired by musician Nguyen Hong Hai, one of the first producers of the genre in Vietnam. He plans to personally play EDM at popular tourist destinations like Quang Binh, the kingdom of caves, Sa Pa and Hoa Binh.

He also wants to make music videos to promote Vietnam’s tourism destinations internationally. He said that the EDM music he plays is very "trendy" and international in nature, combining modernity with Vietnamese characteristics.

"People say travel is to discover and experience new things but for me it’s simple: find a place to play my favorite music."