It takes courage to fight the odds(dealing muscular dystrophy)

Though there is no cure, treatments in the form of therapies can greatly lessen symptoms of muscular dystrophy and improve the quality of life

Last week, I learnt that Vishal had succumbed to the disease he had so valiantly fought for nearly 25 years. Though I had anticipated this news, it nevertheless affected me immensely.

Vishal was born a healthy, chubby baby; everyone adored him, and his grandparents couldn’t get enough of him.

What everyone found cute was that instead of crawling, he rolled around the room. Most often, he would move by resting his weight on his forearms and dragging his legs forward. This is known as ‘Commando Crawl’. His grandfather, an ex-Serviceman, was amused.

He often joked that this child will certainly join the army. But when it continued beyond a year-and-a-half, his worried mother confided in me. She had this nagging doubt that something wasn’t right with her child.

Having worked with children who had cerebral palsy, I had a fair idea what it could be. On my insistence, she took him to a paediatrician, who, after a series of tests, said that the child most likely had a muscle disease, and referred him to a neuro-muscular clinic.

Detecting the problem

After noting the complete history and conducting all tests, our worst fears were confirmed.

Vishal had a genetic disease, characterised by progressive weakness and degeneration of the voluntary muscles, making mobility a problem. He had muscular dystrophy. Kavita, Vishal’s mother was devastated.

She became a woman possessed; she consulted one specialist after another, had endless discussions with doctors, read books on muscular dystrophy, and collected as much information as she could from the Internet.

She found out there are more than 30 types of muscular dystrophy, that it affects more boys than girls, and that the most common and severe type of muscular dystrophy is Duchenne. Vishal was diagnosed with Duchenne muscular dystrophy, which affects the legs, arms and pelvis to begin with, and then progresses, causing the muscles in the body to deteriorate. The worst was yet to come. Kavita was tested and found to be a carrier of this genetic disease. She blamed herself for her son’s condition.

Kavita and her husband both mourned the dreams they had for their child for some time, and then geared up to deal with the ‘new normal’ and adapted to the current situation.

Kavita, a woman with grit and a never-say-die spirit, wanted her son to have normal childhood experiences. She took him to the playground, though it broke her heart when she saw all children running around and climbing while Vishal just sat still, or gingerly attempted to move around.

The rest of the children laughed at him for being clumsy. They ridiculed him, called him names.

She felt terribly isolated and alone at such moments.

She desperately wanted Vishal to have a sibling. Since she had been sensitised by genetic counselling not to risk pregnancy, she adopted a baby girl. Vishal adored her. With the passage of years, they became friends, sharing almost everything.

Trying to live normally

She knew there was no cure, but treatments in the form of therapies can lessen symptoms and improve a child’s quality of life. She enrolled Vishal in a school and became part of a collaborative team of therapists — (physio, occupational, speech), and teachers, so that all his needs could be met. He progressed from using leg braces to crutches, and finally to a battery-operated wheel-chair. When he had difficulty with writing, she came up with ‘grips’ to help him hold the pen. The school allowed him extra time for assignments, and also allowed him the use of a scribe, besides the use of a tape recorder and a computer.

The teen years were particularly difficult, as by that time, he knew what he was up against. Life-threatening heart and respiratory conditions become more prevalent.

Major symptoms of heart and lung complications include shortness of breath, fluid in the lungs, swelling of the feet and legs. He had read on the Internet that young men with Duchenne muscular dystrophy usually pass away due to these complications before their third decade of life. There were times when depression and loneliness became the norm. It was a trying period for Kavita. But she did not give up; with support from husband and family, she overcame the negative emotions and carried on bravely with Vishal. She planned family holidays, educational visits, took him to the movies and sat with him discussing spirituality.

She always had a practical problem-solving approach.

Not very long ago, people kept children with muscular dystrophy hidden. Unless affected with this degenerating disease, no one can come close to fully understanding what a family goes through.

There is little or no public awareness. The remedial services are poorly organised, fragmented, inaccessible and impersonal. The responsibility of caring for a child with a long-term illness rests with the parents, who are already burdened with taking care of the other children as well as financial issues.

The impact of long-term illness in the family often exacerbates many existing psychosocial problems, which, in turn, interfere with the ability of the parents to adequately care for their child.

We need to openly talk about muscular dystrophy to family, friends, people, and anyone who is willing to listen. The community must come forward to lend emotional support. I salute Kavita for her grit and never-say-die spirit.