I am currently a graduate student enrolled in the Human Genetics and Genetic Counseling Program at Stanford University, California. Every student that is enrolled in this program must complete a research project related to the field of genetic counseling. For my project I conducted a needs assessment of families that have children affected by Duchenne muscular dystrophy in Madurai, India. This was done via interviews with members of 21 affected families. I decided to collaborate with the Muscular Dystrophy Foundation India for this project; they provided me with access to the participants and appropriate facilities to conduct the study. The reason that I chose MDF India as a collaborator is because it is the only organization in India that is run by parents of a child that was affected by Duchenne Muscular Dystrophy. This gave me confidence that the organization is patient centered, and therefore takes the ethical aspects of human-subject research very seriously. My first meeting with Mr. Louis Stanislas reaffirmed this. During this meeting with Mr. Stanislas was not only open to my ideas about possible research topics but also provided me with invaluable insights into what the community actually needs and what research projects would be most beneficial to it.
All my interactions with Mr. Stanislas via email or in person were very professional and at the same time they were very endearing. I spent a total of four weeks in Madurai during which I conducted the interviews and explored resources that might be useful in having some of the needs of this community met. During the time that I spent in Madurai the enormous impact that this organization had had on the muscular dystrophy community became very clearer to me. The free services provided by this non-profit organization include psychological counseling, physiotherapy equipment, and wheelchairs. In addition to this, the organization plays a key role in enrolling their members in therapeutic treatment trials. They are constantly trying to raise funds and making efforts to raise awareness about muscular dystrophy so that the quality of life of affected individuals and their families can improve.
The organization also plays an essential role in the medical management of these patients by directing them towards specialists such as neurologists, cardiologists, and physiotherapists. They have also managed to provide many of their members with genetic testing for a relatively cheap price. All of these accomplishments are astoundingly impressive given the limited resources that are available in Madurai. Furthermore, the organization has been actively involved in advocacy and has taken significant steps in making the government more aware of muscular dystrophy so that it receives the attention that it deserves. They have also created an accommodation facility in the same building as their main office for volunteers and families who travel a great distance to visit them.
During my short stay in Madurai I noticed the way Mr. Stanislas and his wife/co-founder Mrs. Renganayaki treated each affected family as part of their own family. After each interview that was conducted both of them made it a point to discuss each participant's history with me and supported me through some intense emotional experiences due to the nature of the research. They also organized day trips to nearby villages and schools so that I could get a better idea about the lived experience of affected families. All billing related issues of the project were handled very professionally by MDF India, and I was given whatever support I needed that was within the reach of the organization. From my excellent experiences with MDF India I can guarantee that it is an excellent organization for international organizations/volunteers to work with.
Mr. Stanislas and Mrs. Renganayaki pour their heart and soul into this organization. Their passion to assist affected families is so strong that they have given up well-paying jobs and much of their capital for capacity building of this organization. A point has been reached where their personal funds are not sufficient to achieve the excellent goals that they have for the future of this organization. I truly believe that this organization deserves of the funding that your organization provides, as they will use every cent wisely and efficiently to uplift the muscular dystrophy community of India.
M.S. Candidate, 2013
Human Genetics and Genetic Counseling
300 Pasteur Drive, A081
Stanford, California 94305
650-724-7190 (box 1)
28th September, 2012
A wide range of social (Stigma, discrimination, exclusion, etc), economical (poverty, child labour, etc) cultural (abandoned families, multiple patients under same roof, etc) and emotional (depression, suicide & mercy killing, etc) issues along with the incurable nature of MD make the families jinxed and collapsed. The fact that women are the careers of Muscular Dystrophy, many fathers and their families particularly in the rural setting, begin to rage a war against the mother through various inhuman means. Forceful separations from the family, psychological & physical abuse by the spouse & in-laws, have been the most common forms of victimization. There have been numerous instances where the father disowns his family resulting in the mother taking the burden of protecting her children including the disabled and risky child. There are also instances of appealing for mercy killing and/or self destruction by one of the parents. The lack of moral strength and the inability to cope with the social pressure are the issues that the project intends to address by establishing a rejuvenation centre. The centre would provide short stay facility to such kind of parents & patients and provide them a variety of morale building services like psycho-social counseling, meditation, need based spiritual orientation, yoga therapy, etc.
In this regard, we are desirous of establishing a ‘rejuvenation home’ at a rental facility with basic medical, rehabilitation and support services within. While this may require at least $.54,000.00 per year including the setting up and running costs, we at present look for a minimum of $.24,000.00 only to set-up the facility. We are hopeful of raising local resources to meet the monthly recurring costs. Needless to say, this would be a great help at a time that is much required. It would be our great pleasure to duly acknowledge your efforts and all the donors by listing their names in a pleasing manner at the ‘rejuvenation home’ and our website.
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I applaud Ms.Renganyaki's very sincerely from the bottom of my heart. As doctors we learn about various medical conditions and treatment, but still there are so many conditions and disorders which have no treatment. It is people like Renganayaki who actually make such a huge difference for these innocent children who right now, require love,emotional and financial support of their family and society. While I find it extremely difficult to come to terms with what has happened to her in the past, her desire and dedication to help others who are now in a similar situation is very heart rendering.
This is really an article of "making a difference" and I appreciete the Hindu newspaper for publishing this column
What a wonderful woman she is. She is really blessed.
A very touching, heart-breaking and inspiring tale.
A moving story, Thank you Hindu team for writing on a little known subject
Not a Story of Dying, but one of LIVING, Living with Grace...
Not a story of losing, but one of FIGHTING, Fighting a losing battle with Steadfast Courage and Grit ...
A Story of Valour and Hope!
We are with you dear MDFI families...
Madam. Renganayaki is the real super mother to many of us. She has been our sole source of courage and strength and helps us keep going.
Congrats to Madam. Soma basu.
A real heartbreaking story. A mother superior is the apt name given for
Mrs Renganayaki. Though she lost her only child for muscular dystrophy,
she still fights for the other children as the mother for all. Hats off
A Mother is a Mother,worthy of worship,regardless of her age as compared to one who wishes to worship her.As I read somewhere,'When one door closes,it is almost a rule that, one opens somewhere else.But we stand staring at the closed door with so much anguish, that we don't see the one, open'.Even the snap accompanying the article speaks eloquently of the Mother of Adhiban.Renganayaki evidently refused to be 'anguished', further involved herself in assisting those with kid/s like her own.Oh Mother I salute you.
My salute to Madam Renganayaki and Mr Louis. they have shown the
courage and vision to help people with MD live a life. Also to
parents of children having MD gets to know that they can make their
child's life better. In India where any kind of disability is looked
down, standing solid for them and giving them right to live, live a
life with dignity is inspirational. I know with the resolve and
determination this wonderful couple have shown, their dream of having
a multi specialty hospital will surely be a reality soon. Hope no
disability be strong enough to rob the right to live from a child or
their parents. Renganyaki and Louis are the leaders we must follow.
I know Louis as a colleague since 1995, and his determination and
courage has been unwavering. At the same time, his wife has also been a
pillar of strength to him.
Both of them turned a personal tragedy into a public crusade, and in
doing so, have become a beacon of hope to parents having children with
This is the triumph of Adhiban's life!
Heart touching incident but a challenging and courageous decision taken by the couple to move froward and do serve the similar cases, really God will bless them in their endeavour.
Having met Renganayaki and Louis, I doubly applaud their dedication - it requires a lot more than strength to convert such a loss into a way of helping others! Wishing our country many more such visionaries!
What a beautiful article…..brought tears to my eyes….I am sending many many prayers your way for your dreams to come true
converting a loss to an positive action is really incredible
my heartfelt well wishes
Mothers are mothers loving caring and obliging..I happened to go thru a CD and book by Prof Murray who has his weekly meetings with his students who love him and make themselves available to hear him talk.He was also down with muscular dystropy the degenerative disease.We have heard of Prof Stephen Hawkings who is afflicted with Greig's Syndrome also a degenerative disease. He was advised he would live for another 14 weeks only at the age 21 or so but he still lives and uses a voice recorder to give lectures.
Returning to Mrs Ranganayaki and her husband Louis are extraordinary people and deserve all help.
This journey is moving an extremely motivational. The passion and
empathy you'll exhibit is commendable. Dasra is really proud of having
you a part of our family.
'Unselfishness is God'-Swami Vivekananda.
G. Renganayaki Amma, You are intensely divine!
A heart-touching story
This article moved me terribly and my Eyes were flooded
with tears. The true love of Mrs. Renganayaki and Mr. Louis would
have definitely helped the boy to overcome the pain and difficulties .
Despite their sacrifice ,it is obvious that they are on a mission
with reasons for the great cause. It is no one`s stretch of
imagination that the seriousness of this dreadful disease is least
known to the society even today , but for the sincere and untiring
efforts of this committed couple through MDF India . My special
prayer for the couple to take MDF to a greater height
I personally salute Renganayaki and Louis for their contributions to the
disabled people and the disability sector at large. I wish them all the
success in their dreams.
Respected Renganayaki and Louis you are really great.It is very simple
to say anything but you are practicing in your real life everyday. This
journey is for social change.
Both of you Louis & ur wife are real Heroes !! The pain & suffering you
have went through made you more sensitive to those with similar
suffering. You have become a beacon of hope to parents having children
with Muscular distrophy and you are model for all those parents who are
facing similar situation in life. I admire your dedication & commitment
to this noble cause. Thanks to THE HINDU for publishing such life
stories of lessons
Great work Madam!!! People like you are real heroes of our country.
I am very happy to learn about all the efforts made for the Muscular Dystrophy in India. I have a son who is now aged 20 yrs with Becker Muscular Dystrophy, inspite all the doctors said that he will be soon on wheel chair, his legs is still carrying him, THANK GOD. In Mauritius, we have a Muscular Dystrophy Association. I will be very happy to know if your association be made known to us.
I am sure Adhiban's courage and sense of humour will always be there to
cheer up both of you and give you the strength to achieve the mission of
MDF. Wishing you success in your endeavours.
Renganayaki... You are a real hero
My eyes are filled with tears as I write this comment. I am grateful to all your efforts. Spreading awareness is more important than anything else in case of diseases like muscular dystrophy. Its heartbreaking to know that there are 3500 families in India going through so much of pain.
Good and inspiring work done by the couple Mrs Renganayaki and Mr Louis
Mrs Ranganayaki has proved it again that, Only mother can replace a
mother. It is not enough, If I say just Congratulations, because India
needs such brave dedicated mothers who have undergone trauma a and still
nothing stops them. I want you to still continue your good work and help
all those who really needs your service. You are one among the very few
persons in India doing such great gob and I wish you and Mr Louis all
the very best and keep up the good work. Prasanna - Presedent- LSD
Congratulations on the articles featuring MDF and your family in THE
HINDU. It is wonderful to see that the media is finally beginning to
take notice of this issue and of the inspiring work your organisation is
doing. Thanks to THE HINDU and Ms Soma Basu for featuring this heart
It is such a beautiful article written with some care......May God give
much strength to the couple in what they do.
It is a commendable effort by both Mrs Ranganayaki and Mr. Louis! Many people are grateful for all your efforts. I wish you both loads of success with MDF-India!
Three cheers to Mrs. Rengayaki. You have created history innumerable families. I am
quite pleased to see the interest taken by the print media to highlight such a genuine >and needed cause.
In these modern days , where every human relationship is valued only
with expectations and returns,what a rare and dare personality we see
in Mrs Renganayaki!It is not the disease of MD that is a threat to the
unfortunate suffering lot but the negligence of timely medical and
emotional care by the society that is the biggest threat.In this
context, MDF India is an eyeopener to many in the world who may not
be even aware of MD. MDF of India deserves everyone`s support and it
is time we show the smile to rest of the world in eradicating MD,
Thanks to this dedicated Couple of Mrs Renganayaki&MrLouis.May GOD
be with them throughout for their noble cause.
I congratulate Mrs.Renganayaki for her contribution to the society at
large by this noble method.
Mrs Renganayaki and Mr Louis are the real super heroes of our country. I wish them all the success in their dreams.
The great work being done by Ms Renganayaki &Team, and the portrayal of the path leading to it in The Hindu is highly commendable. Muscular Dystrophy and its impact on the families are still relatively unknown areas for many. As a person who has worked with families of children with Muscular Dystrophy, I must say that the recognition of the distress they go through and the need for
support is extremely high. The way it is being addressed by MDF is laudable. Hats off to you all!!
Good and inspiring work done by the couple Mrs Renganayaki and Mr Louis
I earnestly appreciate the efforts made by you to bring to light such an important issue as Muscular Dystrophy. Many a times these important problems are pushed under the carpet even by the family members. Print media has immense power and I thank you for your awareness drive which is indubitably the first step. These issues come with a lot of social stigmas attached. Awareness will also create acceptance and support.
Please keep up the good work. Shalini, Chairperson, Fragile X Society India
My eyes are filled with tears as I write this comment. I am grateful
to all your efforts. Spreading awareness is more important than
anything else in case of diseases like muscular dystrophy. Its
heartbreaking to know that there are lot of family in India going
through so much of pain.I am sure Adhiban's courage and sense of
humour will always be there to cheer up both of you and give you the strength to achieve the mission of MDF. Wishing you success in your endeavours.
Congratulations to Soma Basu for an inspiring story and to 'Hindu' for its publication. No words are enough to eulogise Mrs.Renganayaki and Mr.Louise for what they are doing for the cause of MD and thousands of affected families. To all those who love and adore dear Adhiban, he is still alive with MDFI. He is constant reminder to the paediatricians to remind them for doing early and proper diagnosis. He is motivator for the school administrators to recognise and meet the special needs of 'different children.' He is the green signal to the political leaders of the country to shed their inhibitions to discuss the issues of disabled persons. He is the guideline how to plan the healthy family. Million salutes to this wonderful parents and all the best for their unique and benevolent work.
Love never fails. Love always protects; always hopes; always perseveres.
Renga & Lewis, your journey of love not over with Athiban; it continues
with the children carrying MD. Let your efforts bring smiles on the
faces of the children with MD and their parents! God bless you!
Your child was a blessed one that he had a mother like you. And you are
a blessing to the society now, making people aware of the conditions,
fighting for the rights of the MD affected. In your every step I think
you have been an example to people.
Kudos to your efforts madam...God bless you and give you & your husband
more strength, energy and will to continue your support for this cause.
Hats off to a brave and truly inspirational person. The world needs more
people like you. May the Almighty bless you abundantly. Perhaps this is
what you were created for.
It is a great act of love and courage. It is really inspiring to see both Renganayaki and Loius taking up the mission of supporting other needy families.Let us help them in connecting with people and corporates who can support this effort. Best wishes in your endeavours. Keep moving and all the best.
I've not been with someone else, who had gone through so much pain and came back smiling. Smiling, not because the pain didn't hurt them, it indeed hurt them badly. But because, they went through it together. They fought together. They are a source of inspiration to so many others.
May your loving efforts bring smiles to scores of faces. May GOD be with you, blessing you with the strength to continue in your committed, benevolent endeavor.
I know personally Mr. Louis & Renganayagi. The pain they had ( during the last months of Adhiban) is not quantifiable. Now they work for the betterment of children who affected by M.D and the same is the driving force for their life. God give them strength & wealth for the noble cause.
The episode is so deeply moving that I could not, in other words, I did not have the mental courage,to complete the reading.This is the first time ever in all my life such a thing has happened.
It's two and a half years since Adhiban surrendered to death. He was only 17 years, 5 months and 13 days old when he passed away, in a room full of friends and well-wishers. For one last time – his eyes told his mother – he wanted to embrace and kiss her. But muscular dystrophy had rendered him so weak that he was unable to lift himself.
G. Renganayaki masks her sadness behind a smile, but nothing can take away the pain of a 13-year battle against this progressive degenerative muscular disorder. She takes me from the first doctor's appointment that held bad news to the unrelenting patience of her baby, who believed his parents could save him from any calamity.
This isn't a story about death. It is the story of how Adhiban lived and was guided with his parents' unconditional love and persistence despite all odds. It is about a complex relationship between family members, the emotional impact on them all, the effect on finances, the resigning of jobs, despair and denial, and acceptance of tolerable pain. And after it all, the conversion of grief into energy to work for children with MD. “All the good things that I was able to provide my son and those I wanted but could not, I am trying to give to as many children who are fighting a losing battle with MD,” says Renganayaki.
In 1996, Renganayaki and her husband M. Louis Stanislas thought it abnormal that their four-year-old boy found it hard to climb steps or run around, but their paediatrician dismissed Adhiban's problems as calcium and vitamin deficiency. It was only two years later that a homoeopath felt there was something wrong in the little boy's calf muscles and advised them to meet a neurologist.
Recalls Renganayaki, “After a few expensive tests and results, the doctor just told me 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.”
The young couple diverted all their time, energy and resources to their son. “We started researching and compiling all information from the net and books. We were shocked by the paediatrician's failure to diagnose even though without our knowledge we had described the exact symptoms of MD in our child.”
The other decision they took, albeit unknowingly, was to focus on Adhiban. “It was later when we were scouting information, that we found that once the genetic mutation enters the family, it is inherited by siblings too either as a patient or carrier,” says Renganayaki.
While taking care of her child, Renganayaki realized there must be so many families in a dilemma and lacking in information. “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.”
Says Renganayaki, “I always built a positive world around him. Whenever he asked me why he was unable to run and play like other children, I would tell him other children were not able to score more than him in exams. That motivated him to do better in what he was good at.”
While preparing herself for the inevitable, she silently initiated a movement for MD patients and their parents. Within two years of Adhiban's diagnosis, she registered the Muscular Dystrophy Foundation India (MDFI) in 2000 and committed herself to it.
A decade on, the MDFI has grown into the single largest organization of and for MD patients and parents across the country, offering reliable information, medical advice, appropriate guidance and support, and, most important, confidence and hope to over 3,500 families with one or more MD-affected child.
“I have seen families with five MD children. It is difficult to imagine the trauma. I attend two-three funerals every month and identify with each of them,” she says.
As a mother who suffered the loss of a son, Renganayaki has spoken on how MD can be prevented. It is a sensitive matter in our society, she feels, but restricting the inheritance of the disorder is the only way to prevent it.
She also brings out a quarterly newsletter on MD in India and distributes 3,500 copies free. But for her efforts, MD would not have been listed as one of the types of disabilities in the Rights of Persons with Disabilities Bill, 2011.
She has painstakingly simplified the cost factor of high-end research initiatives like stem cell therapy to make it accessible to ordinary families. On an average, stem cell therapy costs Rs.15 lakhs, but through her persistent talks and meetings with Bangalore-based research institute, the International Stem Cell Private Services Ltd., she has brought it down to Rs.1.75 lakhs for those registered with MDFI. Even the waiting period has been reduced from three years to four months.
“There can not be a better mother than her for any MD child,” says her husband, who stands rock-like behind her every thought, idea, proposal, and programme. “She has given so many parents the courage to smile in such an extraordinary battle.”
Renganayaki networks with doctors, hospitals, clinics, schools, organizations, friends, well-wishers and neighbours across the country to be able to deliver help to an MD child in times of emergency or otherwise. She personally interacts with 1,000 families and with the rest shares a unique bond over the phone or through e-mails. Much of her time now goes in travel and meetings. “I am available for them 24X7 for any emergency arrangements or help, in all weathers, through any mode of communication,” she adds.
It is Renganayaki's dream now to set up a multi-speciality hospital exclusively for people with genetic disorders and a hospice for MD children. This school and college topper, once a civil service aspirant, always wanted to do “something useful in life.” Having channelled her emotions and come so far, Renganayaki will surely accomplish her mission.
(Making a difference is a fortnightly column about ordinary people and events that leave an extraordinary impact on us. E-mail to email@example.com to tell about someone you know who is making a difference)
Muscular Dystrophy in India is not what it is in developed countries. The socio-economic and cultural complexities are much worse than the medical conditions as such. More than 2 MD children in a same family, economic ruining, deserting of women for them being careers, the myth of ‘Karma’ and appealing for grant of euthanasia are commonly seen problems. The DMD children in India are dying at least 10 years in advance as compared to their counterparts in the developed countries. We could not bridge this gap of premature death for various reasons including lack of general awareness, ignorance of the state & poor standards of care and medical support. It is presumably for these reasons that the international research initiatives refuse to recruit patients from India. Even the government institutions in India refuse to fund clinical trials particularly that of stem cell therapy. The reasons are lack of institutional capacity, regulating & monitoring authority etc. This has only enabled commercial –exploitative operations on ‘Stem cell therapy’ which is being performed for as high as $.5600 per session with hardly any follow-up and support. We, as a parents’ organization had with much difficulties evolved a subsidized program and have completed a course of 5 sessions for 26 patients (comprising of DMD, BMD, LGMD & SMA) and doing the best possible follow-up and documenting. The results as being seen, particularly with younger wards are encouraging. Still, we could not call it as a ‘clinical trial’ for want of clinical support and funds. Potentially high rate of occurrences attributable to the absence of the notion of ‘Prevention’ and the greater prevalence that is attributable to the population of 1.21 billions warrant a broader perspective, unique knowledge & cooperation. Launching of focused ‘clinical trials’ in India is the need of the hour. Join us!
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