When Pooja Parashar gave birth to twins in 2007, the entire family was ecstatic. But something was amiss — because the babies were born prematurely, one twin, Som, had issues with oxygen reaching his brain.
At the time, Pooja was in Gwalior, Madhya Pradesh. She says they didn’t have the best access to facilities and didn’t realise the problem early.
Five months later, she started noticing differences in the twins and saw that the left side of Som’s body was not moving well. She went to a neurologist, who diagnosed the infant with Cerebral Palsy (CP), a congenital disorder caused due to abnormal brain development, before or after birth.
“The doctor told us that we will have to start taking Som for physiotherapy regularly. The place we stayed in didn’t have good facilities, so we moved to Ahmedabad in 2008 and started physiotherapy there,” Pooja tells The Better India.
The financial toll on a child with disability
She adds that while taking care of a child with CP itself is a challenge, the financial stress is also a lot.
“Som has been attending physiotherapy six days a week since he was five months old. Today, he is 15. This is not cheap. Earlier, the charge for one session was Rs 250, which has increased to Rs 500 now, almost Rs 12,000 per month. My husband works in sales and all his income is spent on therapies and treatment,” says Pooja.
Apart from therapy, children with CP also have to get certain surgeries done, including botox, which helps relax the muscles. Som has had more than six such injections so far, each costing at least Rs 1-1.5 lakh. Meanwhile, as he grew older, so did the number of surgeries, which would cost Rs 12-15 lakh.
During this period, Pooja’s husband lost his job due to the pandemic.
At her wit’s end and determined to get the surgeries done for her child, it was in 2019 that Pooja first met Shraddha Soparkar at a physiotherapy session.
Shraddha runs a trust called Madhuram Charitable Trust, which provides therapeutic and surgical assistance to children with disabilities.
With Madhuram’s help, Pooja was able to get the corrective surgeries done for Som in March 2021.
“The cost of surgery was beyond our capacity. I happened to meet Shraddha at a physiotherapy session and heard about the help she provides. We had been able to manage so far, but this was impossible for us. She is truly helping people at the ground level and I am eternally grateful to her,” says Pooja.
Like Som, Madhuram Charitable Trust has helped more than 800 children with therapeutic and surgical assistance. They help children who need physiotherapy, occupational therapy, speech therapy, applied behavioural analysis, corrective surgeries for major muscle groups and joints, botox surgeries, hearing aids, and crutches.
The organisation came a few years after the birth of Shraddha’s daughter Shruti.
‘What are you running after?’
Shraddha (37) started Madhuram in 2018 after witnessing firsthand the woes of parents who had disabled children. In 2016, she gave birth to her daughter, who was later diagnosed with Cerebral Palsy. This, Shraddha says, changed her entire worldview.
A lawyer and businesswoman born in Jabalpur, Shraddha runs a factory of hygiene products at Changodar in Ahmedabad and a company named Perfect Assetware in Jabalpur. For years, life was all about business for her, till Shruti came around.
“I have been running all my life and my focus has been on business. I hail from a business family and was married into one. When Shruti came into my life, it brought about a big change in my thinking. I paused for the first time in life, and thought, ‘What the hell are you running after?’” says Shraddha.
She realised that CP doesn’t have a quick remedy or one surgery to solve everything. It is a slow process. Being from an affluent family, Shraddha was able to afford the best therapies and surgeries for her daughter.
Sometime in 2018, she was at a therapy session for Shruti at a centre in Ahmedabad. All the mothers had gathered for lunch. Shraddha noticed that one lady was only consuming chaas (buttermilk).
“I asked her, ‘Why do you bring buttermilk for lunch?’. Her answer shocked me.
She said, ‘If I eat daily, how will I pay for my son’s therapy?’.
“She worked as domestic help and had pooled in all her money for her son’s therapy. This moved me, and I decided to help her. I started paying for her son’s therapy. Slowly, word spread, and I started providing financial assistance to more children,” says Shraddha.
When she helped the tenth child, her husband suggested that she start a trust to help more people. And so, Madhuram was born.
Shraddha says that while the emotional toll of raising a disabled child is a lot, if you add financial problems to it, it becomes even more draining.
“Despite having the best help, the initial years of taking care of Shruti were draining and taxing. If you don’t have money, it gets even more difficult. For a disabled child, therapy is very important. It helps in their development. But it’s very expensive. Children also have to get several corrective surgeries done,” says Shraddha.
During the lockdown, therapy centres were shut. Shraddha wondered what next she could do to help these children. When she realised that these centres wouldn’t open for a while, she launched a project called Stepathon, which provides prosthetic legs to amputees.
“Good prosthetic legs are expensive but make a world of difference. With them, people can live a normal life. These legs are imported from Germany and cost a minimum of Rs 1 lakh per leg,” says Shraddha.
Madhuram has provided 100 prosthetic legs and hopes to provide 400 more by March 2023.
They are also starting an aqua therapy centre in Ahmedabad.
“Aqua therapy is the diamond of therapies for disabled children. It has 10 times the effects of regular therapy. However, it is expensive and costs Rs 1,500 – Rs 2,000 per day. We’ve managed to secure funds through CSR and will be building Gujarat’s first aqua therapy centre,” says Shraddha.
This centre will be able to provide aqua therapy for free to 100 children every day.
Shraddha stresses that therapy not only helps children with mobility, but also in their education.
Educating disabled children
Pooja says that she faced great difficulty in getting her son admitted to a good school.
“Even if schools are willing to admit our children, other parents have a problem. I have run around many schools in Ahmedabad and didn’t give up until I secured admission to a very good government school. Today, my son is in Class 8 and is performing very well, thanks to his teachers and therapy. Other children also help him, with notes etc,” says Pooja.
According to the 2011 Census, there are over 78 lakh children with disabilities (0-19 years) in India. Of these, three-fourth under the age of five don’t attend school, according to a 2019 UNESCO report. As many as 27% of disabled children never attended any educational institution, the report adds.
Shraddha says that good therapy from a young age aids children in their education.
“Apart from everything that a parent goes through, this societal stigma adds to our woes. There is a total lack of inclusion and accessibility for disabled children. No one accepts them, including some parents. They don’t bring them outside, to social functions. I make it a point to take Shruti with me everywhere I go. Good therapy, along with a good education and acceptance by family and friends, nurtures children,” says Shraddha.
Edited by Divya Sethu