Mind matters

KOCHI: “I don’t know how long my voice will stay with me,” says Krishna Kumar, but he quickly adds, “But I have made all the arrangements to ensure that life goes smoothly after that.” He was just six months old when the doctors diagnosed him with muscular dystrophy, a rare genetic disorder which is progressive in nature. The verdict was that there is no cure and a short lifespan. But Krishna Kumar was a fighter and he took everything that his medical condition threw at him head on.

There is no mobility, the only mobility he ever experienced was in his forearm, but he lost that too when he was around 14. It is his voice, intellect and indomitable spirit that have seen him through all the curve balls that life threw at him. Never to back down, Krishna Kumar is one who celebrates his life and lives it to the full. One full of dreams, he yearns to tour Europe one day.

But not every other person battling this medical condition can be as optimistic and free-spirited like Krishna Kumar is. And that is exactly the basis for the formation of ‘Mobility In Dystrophy’ (MIND), a trust for muscular dystrophy patients. Formed by those suffering from the condition, the organisation attempts to make significant changes in the society apart from being a support group for the muscular dystrophy patients.

They are starting from the scratch, creating awareness and fighting for their rights. It is not just creating awareness among the public but amongst patients when most are taken for a ride by quacks. “Most people are not aware of the condition. And many get cheated in the process. No state government in the country has a correct database of the muscular dystrophy patients. And these are areas we intend to address,” says Krishna Kumar K K, a techie who is the chairman of the trust. The trust was only formed last year and now it has close to 400 members.

Krishna Kumar K K, who works as a senior manager at an IT company in Kochi, says they are relentlessly identifying the patients and has already created a perfect database that clearly documents the patients and the level of their disease. Skill development programmes have been started. Around 10 members have been roped in to make paper pens and handicrafts.

“The greatest dream is to start a rehabilitation centre for them. This is a much graver disease as there is no cure. And it is progressive in nature, affecting mobility as you age. We hope that a home for the patients can be started with the involvement of the government,” he adds. MIND is in the final works of submitting a proposal to the government.

Mobility In Dystrophy (MIND)
Formed by those suffering from muscular dystrophy, the organisation attempts to make significant changes in the society apart from being a support group for the muscular dystrophy patients