How a young mom turned into a saviour for kids with Cerebral Palsy
Shraddha Soparkar was leading a good, well-cushioned life when a rude shock of destiny jolted her. Mother to a son, she had delivered a baby girl, and family, as many would say, had become ‘complete’. But the bliss the second-time mom experienced was short-lived. The baby girl, born premature, developed some infection which led to some major complications. Doctors informed her that the baby’s cerebrospinal fluid had stopped getting absorbed, which led to bloated head. “I took her to the best hospital in Mumbai, and the little girl had undergone three surgeries by the time she had turned four months. Finally, a shunt was fitted in Shruti to drain this fluid. But due to all this, 35 per cent of her left brain got damaged which left her paralysed. I was shattered to see a normal child turn into a special child,” says Shraddha. But her personal tragedy made her create something beautiful – the Madhuram Charitable Trust to help all kids like her daughter Shruti, get much-needed medical help. The trust, set up in 2018, helps special kids by providing various therapies, hearing aids, crutches, speech therapies and Botox surgeries. Life $ More spoke to Shraddha Soparkar, Founder & Principal Trustee, Madhuram Charitable Trust. Excerpts:
What led to the setting up of the Madhuram Charitable Trust?
My daughter needed a lot of physiotherapy sessions (she still does). At the physiotherapy centre where I used to take her, I met a lot of moms of special children. They all accompanied their kids, and we always shared ways to deal with our children and encouraged each other. We often had meals together. I noticed one of the women used to visit the centre on alternate days. Then, I realized that she brought just buttermilk for lunch. When I asked her the reason, she replied that she could either afford a meal or a physiotherapy session for her child. This shook me, and I offered to sponsor her child’s therapy costs.
Slowly, I realized there were moms like her, and I ended up sponsoring all of these. That was when both my husband and father-in-law advised me to set up an NGO (Non-Governmental Organisation) if I wanted to reach out to many more children. And, Madhuram Charitable Trust was set up, in Ahmedabad, 2018. In the last four years we have been able to help more than 800 kids.
What challenges did you face on the way, and how did you overcome them?
I noticed that for a physiotherapy session, which cost Rs 450, the parents became irregular in attendance when we offered to pay for them. This meant that the slot booked was wasted, and so was the money. This was a major challenge. We overcame this by seeking a small contribution (Rs 50 per child) from the parents. As they became a stakeholder in their child’s treatment, their attendance improved.
The next big challenge was Covid-19 pandemic in 2020, which put everyone’s life in a disarray. Therapy centres got shut. Now, special needs kids do not sit in front of a screen for online physiotherapy; they need active engagement. And they are delicate kids. I remember, I felt scared to touch Shruti during the Covid-19 pandemic.
On the other side, with activity being low during the pandemic, the Trust funds were not getting fully utilised. Idle funds worried me. I wondered – What else can I do? Where is the need? Where can I pump in funds to make a visible difference? A little research made me realise that there were many physically challenged people who had undergone a leg amputation and were not wealthy enough to afford a prosthetic leg. I decided to divert funds towards them.
Do parents accept their special kids and they remain in denial?
Denial is one of the common emotions some parents experience when their children are diagnosed with special needs or some type of disability. It is a harsh reality that even today with all our education there are many parents who remain in denial about their child being special. Worse still is the fact that sometimes the family blames the mother for it.
Denial is the root cause of many problems as it leads to delay in therapy. By the time the parents accept that the child is mentally challenged, it gets too late to start the therapy or the treatment. I feel most of the kids can be helped if they receive proper medical intervention at the right time. Due to proper therapies/medical treatment the child can become almost normal or even 100 per cent normal.
How does the NGO function – through donations or is it self-sustaining?
Madhuram functions with generous support from our well-wishers, supporters who contribute not just financially, but also by devoting their time, knowledge, skills, and experience in building up the trust, setting up systems, as well as marketing & communication. There are skilled doctors on our roll. We receive donations from CSR groups, other Foundations, corporate leaders, and individuals passionate for disabled community and their rights. And this helps us fund the various activities undertaken at Madhuram.
Tell us about the Stepathon project.
The primary goal of this project is to provide a prosthetic leg free of cost to the poor and give them mobility, relevance, and dignity. Under Stepathon, we provide German imported prosthetic leg to bread earners, children and women, and help them walk and lead a normal life once again, and it is given absolutely free of cost. It is a custom-made leg, and needs extensive physiotherapy afterwards. So far, we have helped 107 people and our target is to reach 500 people. The prosthetic leg, which is fitted on the recipients we identify, is light weight – not more than 1.5 kg. The leg is very comfortable, so much so that people often forget to remove it and refit it once a day, which is the advised protocol.
How do you create awareness about an inclusive society?
That’s easy – we use social media and print media for better outreach along with community events. All this enables us to spread awareness.