Dealing with Limb Girdle Muscular Dystrophy (LGMD):

Dystrophy boy’s victory

Rohana Pushpakumara and his wife Piyumika has been looking after him for the last two weeks. His wife feeds him. Rohana bathes him, sits him on the toilet, apply medicinal ointments and does everything until he puts him to bed at night

Chamikara Weerasinghe

The going was getting tough for Lalith Wijesundara after he entered Jayawardanapura University. He was increasingly losing his ability to walk, get up from a chair or to carry heavy objects. The doctors said he was suffering from a rare muscular disease, a one in a million case, known as Limb Girdle Muscular Dystrophy (LGMD), which could eventually strike its sufferers to a wheel chair.

He faced the horror of being diagnosed with a disease that has no specific treatment at the age of 21. It was fear and anxiety at first, having to cope with his newborn fate with LGMD. “At least I knew what I had to deal with after the diagnosis, that was a relief,” he said, “For all the difference it made, I did not want to dwell on the disease or what it could do. I dwelled on what I could accomplish as a student,” he said. On the bright side he knew that although Limb Girdle Muscular Dystrophy can take a toll on muscles, it cannot affect his brains, intellect or senses.

Inspiration

He came to Jayawardanapura University from Maliyadewa College in Kurunagala to study psychology and philosophy. “I cannot afford to be comfortably numb. There are lectures to attend,”

He vowed to be in league with his studies. Lalith, now at 34, is still fighting off his disease. The story of Lalith is one of courage, determination and fortitude that inspired thousands of University students.

Lalith started attending classes regularly despite his physical limitations and pains. “It was not easy not being at my best,” he recalled how his batch mates and other friends at University helped him walk his way to classes. “The love and care given me by my friends at University was incredible,” he said.

“I could not carry my own weight without assistance. So I began to preserve whatever was left in my muscles to participate the lectures.”

For a time he believed that his disease would pass away when he was under medication. But it was a condition arising from relaxation of his muscles rather than from a divine surgery. “It did not last long,” he said. “My legs were getting weaker and the arms were like two balloons hanging from my sides, just weight. I could hardly lift my hand to comb my hair or rub my nose.”

The disease danced around him with frequent falls, twitches, tremors and severe pains, until it knocked him down to a power wheel chair by the end of the first year of his studies. “I used to collapse unexpectedly. It was like I tripped over my own legs,” said Lalith. Yet he continued to attend classes.

He was becoming increasingly popular in the university for his unstinting courage and determination. He soon became an epitome of these very qualities.

My father helped me. But by the time he had spent all his money on my treatment. He had depended heavily on Western medicine at the start.

When it did not seem to be doing enough, he switched to Sinhala and Indian medicine (Ayurveda) and acupuncture,” he said. “I was feeling better on and off following these treatments.”

Saffron robes

It was around this time that this, his father informed him of his decision to leave household life to become a monk. Lalith’s father W B Wijesundara had been a private Secretary to late Prime Minister Sirimao Bandaranaike. “My father worried about my disposition.” His decision to become a monk was not out of mere frustration over his financial constrains.

Kindness

“I had no reason to object” explained Lalith. Lalith’s father donned saffron robes and Lalith’s brother, Keerthi, too followed in his footsteps.

As for Lalith, the battle raged on for survival. He sold his only property at Lake Road, Kurunagala. “I came a long way on a difficult road. I did not want to become a burden to others.” Lalith completed his diploma in psychology and philosophy with success.

He was diagnosed with LGMD after a procedure of muscle biopsy conducted by Prof Nimal Senanayaka, Vice Chancellor of Peradeniya University.

As put by Lalith he was not so unfortunate. “I was able to meet some very good and kind hearted people because of my condition,” he said as he gazed cheerfully at the people in the room from his wheel chair.

Rohana Pushpakumara and his wife Piyumika has been looking after him for the last two weeks. They offered shelter and care to Lalith, at their partially built house at Dodangoda, Kalutara.

Lalith is currently receiving treatment by a physician monk, Ven Katawala Seewalee thera in Mathugama.

The householder, Rohana used to take Lalith to the monk, in his three wheeler for treatment over several weeks, before he invited Lalith to his place.

He helps Lalith, taking care of his personal hygiene.

His wife feeds him. Rohana bathes him, sits him on the toilet, apply medicinal ointments and does everything until he puts him to bed at night.

Their five year old son has become close friends with Lalith, they said. Lalith received support and shelter for many years at the Shasanawhardhanaramaya temple in Homagama under Ven Bheerananda Nayaka thera of Uthuru Thalangama.

“If I received any support in my life it was due to good deeds,” says Lalith.

“He used to be the President of Sri Lanka University Social Services Society.

He started a program called Apuru Pasala to teach under educated children in low income households in Colombo.

“Then it was expanded to educating prisoners. “I taught them from my wheel chair,” he beamed with enthusiasm. “I made some of these children go to Daham Pasal (Sunday Schools).”

We asked Lalith of his plans for the future. He said, “I expect to share my knowledge to serve the world anyway I can. I just need some help to better my condition to be able to do that,” he added. “I held my fort with the teachings of the Buddha, which showed me how one can develop the inner being to establish peace.”