Mr R.S. Anand, whose son Karanveer Singh was diagnosed with the rare Muscular Dystrophy disease DMD, is not just a caregiver father. He has gone ahead to set up DART to research into new treatments for Muscular Dystrophy. He has also fashioned a comic book series in the Super Hero mode for the kids to look beyond their disabilities. Mr Anand is an inspiration for any father!
How did your life change after your son Karan was diagnosed with DMD((Duchenne Muscular Dystrophy)?
To be honest it was like a blow in the dark. One is never prepared for such a reality. But we had to come to terms with the situation quickly. For one thing I was sure that life would not be the same. We had to re-organise our lives to make sure that one of us was always there to help out. Our social life took a complete U Turn.
Could you please explain what is DMD?
The Muscular Dystrophies are a group of genetic diseases characterised by progressive weakness and degeneration of the skeletal or voluntary muscles which control movement. The muscles of the heart and some other involuntary muscles are also affected in some forms of Muscular Dystrophy, and a few forms involve other organs as well. This is due to a lack of a protein called ‘Dystrophin”.
The Duchenne Muscular Disease affects only boys but girls are carriers. Affected boys stop walking by the age of 10 – 12 and become wheelchair users. Their average life expectancy is between 18 – 24 due to the onset of Cardiac or Respiratory failure. Since one out of 3500 boys are affected, India has one of the largest population of children suffering from Muscular Dystrophy.
You are the founder of DART (Dystrophy Annihilation Research Trust) which researches on Muscular Dystrophy; as well as Master Muscle, a comic series about how a boy called Karan becomes a superhero despite suffering from Muscular Dystrophy. Tell us about both the initiatives and how they complement each other
DART was incorporated as an NGO with the focus on research of a a rare disease like DMD of which very little is known to the people. Karan had to face many challenges being a wheelchair user. Social consciousness, accessibility and acceptance by people at public places like malls, cinema halls, restaurants, etc. are the biggest challenges and often lead to people with any condition not venturing out at all. This needed to be changed. Every one loves a super hero and I saw an opportunity to spread the message through Master Muscle, a loveable medium.. Moreover, Master Muscle has brought a lot of awareness to our cause and support has poured in through sales of our Master Muscle merchandise, like shirts, coffee mugs, capps, drawstring bags and T-shirts.
Tell us how Master Muscle has helped shape the children. Please share some anecdotes
Master Muscle being a young super hero has helped both children with a condition as well as others too. Just by wearing the T shirts or caps, kids feel they have a strong connect to the super hero’s world and have become more conscious to the special needs of our kids. For example, at an elevator in a mall, if the elevator happens to be full when it stops at our floor and Karan needs to go up or down, one of the kids would spontaneously go to the people inside the lift and very politely explain the situation and request a few to use the stairs because Karan needs to use the lift. Often, people in public places tend to stare at a child or a person with a condition. These kids will not hesitate to stare back or even enquire if all is well with the people staring. This makes them uncomfortable which in turn embarrasses them and they stop staring. This is almost like a reversal of situations. Kids in wheelchairs also feel they have some kind of super power just by wearing the T Shirt or cap which in turn has instilled confidence in them and made the once shy introverts more outgoing.
Typically mothers are primary carers for the child. Sometimes Dads who are in denial spend hours at work. What is your advice to them?
We have to lead the life we are born in. Living in denial or running away from crisis is the worst thing one can do. The sooner one accepts there is a problem the easier it gets to deal with it and figure out ways and means to handle it. The whole family has to be on the same page. Parents are the role models for children. Even more so in the case of children with special needs. Just imagine the psychological damage it will do to the kids if the dads shy away from their responsibility. In fact if the dad comes to terms with the situation quickly he will be able to cope with the job pressures more easily. Dads who shy away from reality often land up in financial trouble too. As pressure to find some form of treatment mounts, which is often not easily available, their frustration increases. Not being able to talk about it with friends, their concentration at work starts wavering which leads to lower productivity at the work place and eventually lesser financial income whereas the expense mounts as more money is required for medication and management of the child.
What is the role Dads can play and how can they support the child and the family?
In the case of DMD, dads play a crucial role not only for the well being of the kid but more so for the mom. Being an X linked disorder, moms usually end up blaming themselves and that more often than not leads to depression which further makes an already bad situation worse. Dads need to play an even more crucial role to keep the sanity and well being of the family intact and realise there is life beyond disability.
Like my son always says “The only Disability is in the mind”
How can other dads or family members support the parents, especially the father?
Family members need to realise that the family is going through a difficult time and can do with all the help and support from all quarters. Pitch in wherever and whenever possible. Make sure that the environment is as normal as possible. Be more sensitive to the special needs of the family. And in doing so they will realise they have become better human beings which will only enrich their lives further.
A final thought on Father's day
To be a father is a gift and privilege. No aspect of life has any guarantees. Be grateful for small mercies, enjoy what we have and remember “Grass is always Greener on the other Side”
