Interview With Shraddha Soparkar, Founder Madhuram Charitable Trust

Shraddha Soparkar, Founder & Principal Trustee of Madhuram Charitable Trust talks to P Charitha in an exclusive interview with Sakshi Post about  the needs of special children and her future plans and prosthetic leg effort - Stepathon .

You have been providing therapeutic and surgical assistance to children with Cerebral Palsy, how has the journey been in the past four years after starting Madhuram Charitable Trust?

Madhuram Charitable Trust came into existence to raise awareness through shows and competitions about various disabilities. We have also been providing free medical help for needy children as well as young adults while trying to include them in normal life so that they can live independently. We provide therapeutic and surgical assistance as well as post operative rehabilitation and physiotherapy as and when needed, all free of cost. Till date 800 children and individuals with disabilities have benefitted from our initiatives. They have undergone physiotherapy, occupational therapy, speech therapy, applied behavioral analysis and corrective surgeries for major muscle groups and joints. We also provide hearing aids and crutches to the ones who need them the most. We have support of excellent pediatricians, orthopaedic surgeons, and Neurosurgeons highly skilled in deformity corrective surgeries and neurological surgeries who can help the children with congenital deformities, anomalies and neurogenic defect. Over the four years, we have tried to help as many special children as possible.

I saw children with cerebral palsy, autism, Down’s syndrome, and other conditions falling under special needs. Therapy is a slow process; some special needs children may need to continue with it into adulthood.

Word spread that I wanted to sponsor special needs children with financial support for their various therapies. We identified ten kids and began work. I understood the process of working on the needs of poor special children. I got experience through these first ten children.

We identified high-end therapy centres. The ten children availed of their services and we paid for the therapy costs. Word about this help spread. More requests came in. I negotiated the therapy payment per child per hour with the centres. I was able to make the therapy centre reduce the price from Rs. 600 to Rs. 450 per hour per child. There are 70 lakh special needs children in Gujarat. Two percent of India’s population falls in the category of having special needs. This is a big number and good therapy can make a qualitative difference in their life. I had made a beginning with ten and was going on to many more children.

With this vast experience acquired over the years, you have now started Stepathon to provide prosthetic legs free of cost to amputees. Tell us more about this initiative.

There are many poor people who cannot access high quality medical and rehabilitation care due to their socio- economic background and other determining factors, which could enable them on to the path of leading a normal and independent life. These people usually suffer from lower limb amputation due to prolonged illnesses, gangrene as a complication of diabetes or peripheral vascular disease, congenital deformity and physical impairment. Once a person undergoes amputation his/her life comes to a halt due to various reasons be it psychological/emotional trauma of loosing a limb, cosmetic appearance, inability to stand on their own feet, and feeling of being different with the use of assistive devices, etc. Most people are denied access to their previous jobs due to their appearance—adds more psychological and economic burden. After researching the cases in India and abroad and talking to people living with amputation, learnt their LIVED EXPERIENCES of living with amputation and their knowledge of and access to public services available to them in India—the solution which I came up with was to provide high- quality prosthetic legs to amputees at free of cost to make them independent and make their lives better than their present situation. In this regard, we established our network with medical professional, rehabilitation experts and Prosthetic & Orthotic specialists and identified amputees from lower socio- economic background and started providing them prosthetic legs with the support of our well- wishers, CSR, HNIs, and local community institutions and other NGOs. Till date we have helped about 107 such people, and our aim is to provide free prosthetic leg to 500 such amputees.

We started with providing prosthetic legs to breadwinners of the family and then included women and children too to ensure inclusivity and no one is left behind. The entire process includes identification of beneficiary, screening their socio- economic background based on our criteria to avail free services, assessment of the beneficiaries’ needs, measurement at the rehabilitation centres, counselling and re- education on phantom pain sensation, prosthetic leg fitting, gait training and counselling etc. Psychological support and rehabilitation facility to them and their family enables them to breeze through the entire process. Our small initiative helps to bring happiness in the lives of as many people as we can reach out to.

As a mother of a special child you have faced several challenges, how did you address them and overcome adversities?

My life has revolved around my daughter- Shruti’s life, who is a special child. Shruti, my second born was normal at birth. This slightly premature baby had to go through four brain surgeries by the time she was four months old. She possibly acquired an infection that led to four surgeries by the time she was four months old. Later we shifted to Ahmedabad, where she underwent physiotherapy at the best center of the state. During these classes I met other mothers of special children, and we built a strong support system for each other, where we encouraged each other and tried to find solutions for most of the problems. She has been my strength and the reason for happiness too. My experience at the therapy center where I met mothers who could hardly afford therapy, but somehow wanted to continue was the motivation behind starting Madhuram. And we know, together we can overcome all sorts of adversities.

The challenges of special children vary from case to case, and it is also ongoing, what is your advice for parents?

Raising a special child is very expensive. One needs a lot of money for getting the right medical help at the right time. Therapies can be expensive too. Moreover, every child is unique, and may need a different approach, compared to what is working on others. So I would advise the parents to make sure that the therapies of your child are on time, which will enable her or him to become more independent. Always focus on a vocational education for the child, so that one day they can be independent.

What are the understanding and acceptance levels of Indians in appreciating the needs of specially-abled children? Have you seen any changes?

The wealthy special needs children go to big, expensive therapy centres which charge by the hour. Sometimes, therapy can extend to beyond an hour a day. The poor look for places which provide free or low cost physiotherapy and other therapy services. This is understandable. Physiotherapy given to special needs children or adults has to be excellent. It can do more damage than good if not done properly. I researched different therapy centres in Ahmedabad which the poor special children would frequent. I saw children with cerebral palsy, autism, Down’s syndrome, and other conditions falling under special needs. Therapy is a slow process; some special needs children may need to continue with it into adulthood. While the focus was earlier on breadwinners of the family to get therapy and prosthetics, we slowly included children and women too who are often ignored during the therapy process.

You have touched upon many lives in the course of helping people any heart-touching memories that have stayed close to your heart?

At present, our prosthetic leg recipients are spread all over Gujarat. They are men, women, and children – urban and rural – from different backgrounds like being farmers, students, salaried people, retired people, teachers, auto-drivers, housewives, security staff, technicians, and from other work contexts. So far, our recipients fall in the age range of six years to seventy-three years. We have enabled them to live a life of dignity and productivity, confidence and self-respect. Our bread earner recipients earn an income. All our recipients can walk comfortably, cycle, dance (if they want to), and live a normal life.

What are the future plans for Madhuram and Stepathon?

The goal of Madhuram Charitable Trust now is to reach 400 people who need prosthetic legs. We are in the process of gathering funds for this. We call our prosthetic leg effort Stepathon. Honestly it is not a step but a leap by our recipients towards living with joy, productivity, relevance, and active participation in society. With the pandemic having gone, we plan to restart working with special children and adults with a renewed focus and greater momentum.

Aqua-therapy does wonders. The pace of enabling normalcy for special needs people is faster with aqua-therapy as compared to physiotherapy. So, we will combine both the therapies to expedite normal life in special needs children. Madhuram Charitable Trust has managed to get land from the Ahmedabad Municipal Corporation in a central location in Ahmedabad city, which is easily accessible to all. We plan to build a world-class swimming pool there and offer free of cost aqua-therapy to people who face physical challenges or other special needs. We have been allocated a land to build a half Olympic sized pool to run this centre. There will be 20 highly qualified professionals who will train these children. The pool can cater to 20 children an hour and about 100 children in the 5 hours it will be operational. It will be wheel chair friendly, enabling many users to access it independently. And all this will be absolutely free of cost. This pool will be open to general public on chargeable basis for 5 hours in the morning. This will help us in funding the operational costs of the pool.

Apart from this, Stepathon will also be our key mission. Through Stepathon we have helped 107 amputees, while we still have a few hundred prosthetics left with us. We intend to reach our target of 500 prosthetic limbs for the poor and needy before ordering the next batch.

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