Madhu Babu and his wife D. Varija were happily settled in the middle east with two beautiful children, son Sreesh and little daughter Varshini. When Varshini turned one, she suddenly contracted a serious fever. At the hospital, the doctor revealed that she might be intellectually disabled too, and advised them to relocate to India so that they can take better care of her. Varija gave up her ambitious career in interior designing and moved back to India, followed by Madhu.
For months, they ran from one hospital to another; almost every single day they met one new doctor, leaving no stone unturned to offer her the best treatment. Meanwhile, the ground shattered beneath their feet, when one doctor broke the news that their three-year-old son, Sreesh, has been diagnosed with Mucopolysaccharide (MPS) – a rare genetic disorder that doesn’t allow a lifespan more than 10 years.
In 2010, the couple set up Parent’s Association for Children with Special Needs (PAC) in Tirupati, which runs the Sreesh Mandiram School for special children and guides the parents with hope, empathy and support.
They cater to differently-abled persons of all ages
The couple launched the centre to facilitate parents and children alike. Started with 18 parents once, today the number of families at PAC stands at around 70. The striking feature about Sreesh Mandiram School is that they assure to take care of all special people irrespective of their age.
“Most other NGOs or special schools would decline to keep children beyond 15 or 16. Little do they realise the plight of the parents who are supposed to look after them lifelong. So at Sreesh Mandiram School, we welcome everyone. We have admittees from 2 years to 38 years,” Madhu shares proudly, adding that two of their members with Down’s Syndrome have been offered employment at a local firm.
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“Special children cannot survive on their own in this world full of struggles. Without our constant care and supervision, they will succumb to low immunity and inability to express discomfort or sickness. And for us ‘special parents’, it is the commitment of a lifetime,” expresses Madhu.
The school has changed lives for the kids as well as the parents
38-year-old Dinesh is one of the students at Sreesh Mandiram School, who finds it very difficult to respond or move on his own. When his father, a renowned doctor, passed away a few years ago, his mother was left helpless until PAC came to her rescue. “Today, she is doing a government job, relieved to leave her son in our care for the daytime,” Madhu shares.
Indifference and apathy from parents made life difficult for 8-year-old Sarika with severe disabilities. Two well-wishers got her admitted to this school and now at thirteen, she is a happy, smiling kid who has learnt to react, speak and even walk.
A typical day at Sreesh Mandiram begins with parents from in and around Tirupati dropping their children at the school building. Some parents stay behind while others head for their workplaces assured that their little ones are in good hands. Following physiotherapy and special education classes, the kids are taught to eat their lunch independently. “ISKCON has volunteered to provide lunch for some underprivileged children who are also part of our school,” informs Madhu.
Music therapy, counselling sessions are also encouraged along with their most notable initiative – “Win Five Hearts” – where students from local schools and colleges drop in during special occasions to befriend, interact and celebrate with these special kids. “We are fostering social inclusion of differently-abled children in this way,” he continues, “These children would otherwise be restricted to the four walls of the home. Here a fresh change in the environment and mingling with other kids are making them more responsive, self-reliant and happy.”
Though PAC has applied for government funding, till now the school is funded entirely by Madhu, his friends and voluntary contributions from the member parents. Madhu has recently left his highly-paying job to devote his attention completely towards PAC. Yet, the financial burden is no challenge for this fighter couple when compared with the other hardships they sailed through.
An unfortunate conspiracy led to a theft at PAC a few years ago where all their important documents were stolen, leaving the money or expensive furniture intact. But they didn’t lose heart and rearranged everything from scratch. In yet another untoward incident, Madhu and Varija were forced to shift the school to a new locality. “Our neighbours would say that they were cursed to be residing beside a special school where the kids cry all the time,” Madhu reveals the shocking reality.
At present, they are struggling to get permission for taking the kids to a nearby park, as other parents are unwilling to let their children play in close quarters with the special children. The absence of humaneness in our society lies starkly exposed from their experiences.
Unfortunately, the couple lost their son Sreesh in 2015 when he was only ten years old. The bereaved parents have turned his burial ground into a beautiful garden to let his memory live on for ages. In fact, Sreesh Mandiram school has been named after him only.
Message for everyone
Madhu considers himself a ‘special’ father, taking pride to share that his daughter has won the state-level running competition and they are preparing her for the younger edition of Special Olympics.
“We keep on urging parents to get rid of their ego and apathy. Rather, they should consider themselves blessed as God has assigned them the resilient task of taking care of a special child,” he insists.
With the extension of the lockdown the crisis of migrant labourers and daily wagers has just grown bigger due to uncertainty and fear of future. In the migrant colonies, slums and for people in the villages hunger and desperation is building up day by day. This is high time we step up our efforts to support our people who are in dire need of food and hygiene essentials to survive the pandemic, Covid-19.
After the India-wide lockdown, a lot of jobless migrant workers are stuck in cities with hardly any resources while many started retreating back to their villages. With the loss of livelihoods, a large number of them are now struggling to support their families.
Goonj activated its pan India teams and a pan India network of partner organizations and volunteers in urban and rural India. This network, built over the last two decades, helps them learn from the ground, reach material quickly and review and adapt strategy periodically. Intensifying this network has helped Goonj reach and start work across 17produced states/UT in the last three weeks.
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Majority of the Covid-19 relief work by non profits right now is in the metros and cities but Goonj is the only non profit that is also simultaneously focusing on the people in the villages and the ones stuck on highways or somewhere.
Goonj is targeting daily wagers, migrants and other vulnerable groups, who even traditionally are left out like the disabled, sex workers, LGBTQ community.
“COVID-19 is a crisis, yes…But, it’s also an opportunity for us to build the society anew. Not ‘for’ the people…but, ‘with’ the people. And in the process, we will build ourselves too.” – Anshu Gupta, Founder-Director, Goonj.
Direct Monetary and Material Transfer
Wherever Goonj got the permission to open their centres for packing and disbursement of relief material kits, they are creating a kit consisting of 20-30 kgs material including dry rations, masks, sanitary pads and other hygiene material and reaching them to people, as per needs and as per regulations with all safety precautions. This kit will help a family survive for 30 days.
Information till 10th April 2020:
Distributed 15,100 ration kits reaching thousands of people
Reached 17,700 families
Supporting 12 community kitchen across India with 16,600kgs of ration
77,800 food packets provided to migrant laborers and daily wagers walking on the roads across the country.
Provided direct financial support to 32 organisations
In Goonj’s processing centers its trained team of women are making cloth face masks and cloth sanitary pads (MY-Pads), keeping all the precautions and with the permission and cooperation of the local authorities.
In this lock-down phase if you are facing any difficulty getting sanitary pads or you are running out of stock, here’s a detailed but very simple process of making Cloth Pads at home created by Goonj. “This is how we make Goonj MY Pads.” This is how our mothers and grandmothers turned their spare cloth into pads.
This disaster, unlike any other, is unprecedented in its scale and impact and that’s why we all must do our bit with Goonj to continue its relief work for millions of people in this still unfolding long-tailed disaster.