Never alone in MD struggle

Not Alone in MD Struggle -Anthony Thanasayan

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Created on Thursday, 08 January 2015 07:00

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Written by Anthony Thanasayan

Category: Columnist

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Muscular Dystrophy or MD is a serious disease.

A person who has the condition experiences his or her muscles becoming weaker over time, until the ability to walk is no longer possible.

Aquila Dass, 18, has MD.

He was born in Kajang, in the state of Selangor.

He has an older brother and sister in their 30s. They don't have the disease.

Aquila's father, however, had muscular dystrophy. He died approximately six months after Aquila was born.

He was also a wheelchair user.

Aquila grew up pretty much a normal child, until it became obvious that he was different.

Whilst most babies begin to take their first steps within the first year, Aquila, however, stuck to crawling around for the first few years.

It wasn't until he was four years old that he took his first step.

Unlike other toddlers, Aquila had to hold on to objects for dear life.

These included stools and chairs to keep him from falling down and to help him maintain his balance - something he kept on doing as a child growing up.

Aquila had to learn to be very careful while walking. One slight bump into someone (or by someone) and he would end up falling - something he got used to experiencing over the years.

By the time he was 11 years old, Aquila's muscles had got weaker and weaker. It was difficult for him to carry his school bag, either with his hands or even as a backpack on his shoulders.

He had to also start holding on to his classmates and friends in order to remain on his feet.

Three months before his 12th birthday, Aquila's legs finally gave way - leaving him unable to walk, and terribly afraid.

"It was like my best friends (my legs) had deserted me," Aquila told me in a telephone interview last week.

"Being different at home wasn't so bad," he added. "But not being the same as the other kids in school was pretty embarrassing and weird."

Aquila went on to tell me how he was stared at by his schoolmates and treated differently, which he didn't like.

He was also depressed, particularly because he could not take part in athletic sports.

"Just sitting down and watching all the other kids running around and having a good time with each other was no fun at all. I asked God every night to make me like them, that is, to be able to walk again."

Aquila related an incident when he got hurt in school one day, resulting in his having to be put in a plaster cast for a month.

A fight had broken out among some boys outside the classroom. Aquila, who was walking past them, was accidentally pushed into a drain.

He sustained a fracture.

Aquila was helped out of the drain by his teacher and schoolmates and made to rest in the canteen until his brother arrived to take him home.

When his mother returned home after work and heard what had happened, she broke down and cried.

It was then, Aquila told me, that he realised how serious his disability was, and that he was not like the rest of the other children.

And he also knew that it wasn't about to go away very soon.

Things then changed very much for the boy from then on.

After recuperating at home in his cast, things only became harder and harder for Aquila.

Instead of taking pains to make the school disabled-friendly for their handicapped student, the authorities shooed the boy off to another school, one further from his home. They said they could not deal with a disabled child.

But transport became more difficult and complicated for Aquila.

Then, the inevitable occurred.

Aquila began losing interest in his studies and motivation in life.

He became glued to the television all day until he was introduced to a local church near his home.

Aquila said he loves going there because he is treated normally by the members. Instead of being stuck at home, he enjoys taking part in the singing and youth activities of the church.

However, things only really started to change for the positive when Aquila enrolled himself in a centre for disabled persons in Rawang, Selangor.

Called the Independent Living and Training Centre Malaysia (ILTC), it is run by trainers with disabilities who help other handicapped persons with living skills and confidence-building.

Aquila has been living at the ILTC since March last year. He said he has learnt much by living with more senior persons with disabilities.

"I have now learnt some computer skills, typing and email. I have also made some new friends on Facebook, which I didn't have the opportunity to do so before," he said, beaming from ear to ear.

"Part of my responsibility is to help around in the office by answering calls, making appointments and being in charge when our centre's president and secretary - both in wheelchairs - have to attend to outside matters.

"Being here, I've found people who share the same difficulties and pain which I go through, but the difference is that  I am happy to know that I am not alone in my struggles."

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