“I'm confident that we'll succeed in our research. This will not help just me but even future generations to come. I have sent a letter to the PM. My school has also sent a memorandum in which all the staff and students have signed. This research is our last ray of hope and I'm sure we will succeed in this mission.”
Hearing 15-year old Abhay Ramkumar speak to The News Minute, no one will ever associate him to be a victim of a rare disease known as Duchenne Muscular Dystrophy (DMD) which results in muscle degeneration.
Abhay was identified with DMD as a three-year old. His father Ramkumar was a senior employee of IBP Chemicals in Mumbai at that time. Later the family shifted to Kerala for his treatment.
But when all medical avenues were exhausted in search for a cure, they joined a group of 12 parents -whose children too had DMD- based in Bangalore.
These gutsy parents were not willing to sit back and watch their children simply succumb to this deadly disease and that was how the Dystrophy Annihilation Research Trust was formed. This is a research institute solely focused on finding a cure for DMD.
Huge amounts of money were spent to establish the institute with equipments, machineries and drugs imported from abroad. “We have doctors from abroad to conduct research with one senior scientist based permanently at the Centre,” Geetha -Abhay’s mother- said.
The Centre’s experiments on mice proved to be successful and they are now on the verge of a major breakthrough in advanced treatment for DMD.
“Maybe the drug that is finally developed may not come in time to help our own kids, but at least those who are diagnosed with DMD in the future can avail these,” Geetha smiles.
Why the letter to the PM?
Well, Abhay was forced to seek PM Modi’s intervention, because his family had exhausted almost all their financial resources and were left with the last resort of having to sell their house in Cherppu, Thrissur district.
In order to continue his treatment and for the research to fructify, his parents have now been forced to put their ancestral property up for sale.
But owing to certain restrictions imposed by the Archaeological Survey of India, the sale is being hindered time and again.
Abhay’s home is located near the Peruvanam temple. Any buyer will have to comply with certain guidelines issued by the ASI for all properties that fall within a 100 metre radius of the temple compound. This naturally acts as a deterrent for prospective buyers.
All Abhay and his parents want is that the guidelines be restricted to a 100-metre radius from the temple itself and not from that of the temple compound which comprises seven acres.
The family has already spent almost Rs 1 crore till date in the search for a permanent solution to their son’s rare ailment.
“This 140-year old ancestral home is the only asset left. The properties we owed in Nasik and Mumbai have already been sold. We need at least another crore and a half of rupees to take forward the research. We really have no other option but to go ahead with the sale,” Geetha rues.
With all of their savings spent, Ramkumar had to take up a job in Qatar a few years ago. Geetha and Abhay stay in Cherppu while Abhay’s brother Arjun works as a graphic designer in Pune.
“Once we are able to sell the property, we will move to Bangalore and concentrate solely on Abhay’s treatment. We will somehow fight it out,” says an ever-optimistic Geetha.
According to Geetha, Abhay is a brilliant student with an amazing head for general knowledge and who secures more that 90% marks in all exams. He depends mainly on e-books as he cannot lift his hands properly. He generally moves inside the house with the help of a wheelchair.
Abhay and his family are optimistic that the research will be successful in finding a cure and will be their gift to thousands of kids with DMD.
“We will fight till our last breath,” Geetha affirms brightly.
For now, all they need is a small nod from the Prime Minister to take the research to the next level.