This is about a brave heart couple which is crusading against a relatively less known killer disease called Muscular Dystrophy. G Renganayaki and her husband M Louis Stanislas with their only child, a son named Adhiban were a very happy family till they found that their child had inflicted Muscular Dystrophy.
Sometime in 1996, they found that their four year old son was unable to climb stairs or move around freely. Hence they consulted their pediatrician who said that his immobility was due to calcium and vitamin deficiency. But two years later a homoeopath suspected a grave ailment in the little boy’s calf muscles and advised his parents to consult a neurologist.
Renganayaki in her words, “After a few painful and expensive tests, the doctor just told me that your son will be in a wheelchair by the time he is nine years old, won’t live beyond 17, it’s better you go for a second child.”
Shattered by the outcome of the medical reports, the young couple invested all its time researching more about the symptoms of the ailment via internet and books and found that their child was reflecting the exact symptoms of Muscular Dystrophy.
While researching on MD, Louis and Renganayaki found that once the genetic mutation enters the family, it is contracted even by siblings- as a patient or carrier.
While taking care of their child, they realized there must be so many families in a dilemma and lacking in information. Renganayaki had once said, “Adhiban was a topper in academics, extremely sensitive to nature and skilled in art. We treated him as a normal child and the Jeevana School staff was extremely understanding and helpful when he slowly started losing mobility.”
“I always built a positive world around him. Whenever he asked me why he was unable to run and plays like other children, I would tell him other children were not able to love the nature, be sensitive to the environment, read a variety of books and score more than him in exams. That motivated him to do better in what he was good at.”
Inspite of her personal tragedy, Renganayaki thought of many other families, particularly the poor section, who were not aware of the consequences of this disease-and this thought led her to start Muscular Dystrophy Foundation India (MDFI) fully supported by her husband Louis.
Although the couple setup the organization in the year 2000, they could not do much, but committing their fullest time and resources in taking care of their only child.
Adhiban succumbed to MD and passed away at when he was 17 years 5 months and 13 days old. It was the loss of this child that brought MDF INDIA into fullest operations in 2010. Within 2 years of functioning, Muscular Dystrophy Foundation India (MDFI) has grown into the largest organization of and for MD patients and parents across the country, offering reliable information, medical advice, guidance, support, confidence and, most importantly, hope to over 3,500 families with one or more MD-affected children. MDF INDIA is striving to reach out to 1,50,000 patients over the next 3-5 years.
As a mother who suffered the loss of her only child, Renganayaki feels, restricting the inheritance of the disorder is the only way to prevent Muscular Dystrophy.
She also brings out a quarterly newsletter on MD in India and distributes 3,500 copies free.
Renganayaki and Louis have taken great pain to reduce the cost involved in high research initiatives like stem cell therapy to make it accessible to ordinary families. For this, they have tied-up with Bangalore based Stem cell Company, International Stem Cell Services Ltd, which is involved in stem cell research and therapy and worked out the cost of therapy at a good concession for those patients’ families who have registered with MDFI.
Louis about his wife said, “There cannot be a better mother than her for any MD child- She has given so many parents the courage to smile in such an extraordinary battle.”
Louis and Renganayaki network with doctors, hospitals, clinics, schools, organizations, friends, well-wishers and neighbors across the country and at international level, to deliver help to MD affected children in times of emergency or otherwise.
Renganayaki personally interacts with 1,000 families and shares a unique bond over the phone or through e-mails with the rest. Much of her time now goes in travelling and meetings. “I am available for them 24X7 for any emergency arrangements or help, in all weathers, through any mode of communication,” she said.
Louis and Reganayaki’s persitant efforts have been instrumental in getting Muscular Dystrophy listed as one of the types of disabilities in the Rights of Persons with Disabilities Bill, 2011.
The big Achievement:
Louis said, “We have signed a partnership agreement with Indian Bio Sciences for DNA (MLPA) testing. We will be signing another agreement with them in a few days for gene sequencing (carrier detection) – will be the 1st such service in India. Gene sequencing test is the most vital one in preventing further inheritance of muscular dystrophy and defective births. You might be aware that MDF INDIA is the only organization that has been voicing and working on preventing muscular dystrophy, only because we believe that muscular dystrophy is not a medical issue alone but a health issue at large. “
It is Renganayaki’s dream now to set up a multi-specialty hospital exclusively for people with different forms of genetic disorders and a hospice for MD children.
Those who like to know more about Muscular Dystrophy Foundation India, and would like to support this great cause, they may contact Renganayaki and Louis directly:
G Renganayaki, Founder-Chair
Mobile:+91 99943 40123
M.Louis , Executive Director
Mobile: +91 9994368550
Muscular Dystrophy Foundation India
26-B, 1st Street, State Bank Colony-II, Bypass road,
Madurai – 625 010
Tamil Nadu, India.
Phone: +91 452 436 9494