Bidding adieu with a smile
Abhishek Tatiya and Mansi Shah's Happy Feet Home, the first hospice in India for children suffering from terminal illnesses such as cancer, HIV and thalassemia, is set to open its doors this year in collaboration with the Lokmanya Tilak General Hospital. They tell Rinky Kumar why they have started a crowdfunding exercise to raise funds for their venture and how they want to ensure that kids spend the last few days of their lives with a smile on their faces
Either life entails courage, or it ceases to be life. These famous words by British novelist and essayist Edward Morgan Forster encapsulate the ideology of Happy Feet Home, India’s first and only free hospice for children suffering from terminal illnesses such as cancer, HIV and thalassemia. The brainchild of Mansi Shah and Abhishek Tatiya, the centre, which will be built at the Urban Health Centre of Dharavi Hospital, will be in collaboration with the Lokmanya Tilak General Hospital (better known as Sion Hospital). The 1,200-sq ft space, which will open its doors this year, will be a day care centre for kids where they can indulge in recreational activities and undergo art, music, play and dance-based therapies to give them the courage to lead the last few days of their life with a smile on their face. It will also conduct various counselling sessions and offer bereavement support for families to cope with their child’s loss.
Thirty-two-year-old Shah felt the need to build such a centre after working closely with kids at the Akanksha Foundation and the St Jude India Child Care Centre. She says, “After interacting with children, who are suffering from terminal illnesses, on a day-to-day basis, I realised that they and their parents are mentally and physically exhausted. When the doctors finally tell them there is no hope, they have nowhere to go. But what if we could provide physical, emotional and social care to patients and their families? The idea for Happy feet Home stemmed from this thought.”
Shah, who has a Bachelors degree in Arts and a Diploma in Early Childhood Education, knows from her professional experience that this kind of support goes a long way. “At St Jude India Child Care Centre, I was responsible for planning activities such as art workshops and movie screenings for children who were undergoing treatment for cancer. The activities were planned to make the kids happy and motivated and also affect their treatment in a positive way. When children are undergoing treatment, they can’t be exposed to the outside world as they might get infected due to weak immunity. So the idea was to create such kinds of experiences that would make them feel that they are leading a seemingly normal life,” she elaborates.
When Shah quit her job and started ideating for Happy Feet Home, she was joined by 27-year-old Tatiya. The BCom graduate says, “After working in the corporate sector for more than five years, I was tired of the set up and wanted to do something radically different. I knew Mansi as both of us used to work in a voluntary organisation. After quitting my job, I contacted her. Both of us immediately connected on the idea of Happy Feet Home and felt it was the right time to work on it.”
Casting the first stone
Tatiya reveals that, initially, the idea was to build a shelter for the patients. But they changed the plan after doctors told them that it wouldn’t serve the purpose. He explains, “India has a system of close-knit families. When a family member is dying, everyone wants to be together, no one wants to be alienated. Parents wouldn’t want to leave their kids alone. That’s when we decided to focus only on the day care centre.” The duo started off by contacting doctors across various city hospitals. They interacted with them about the feasibility of their venture. Tatiya says, “All of them validated the fact that such kind of hospice doesn’t exist for kids in our country and there was a need for it. But at the same time, they would ask us questions such as ‘How do both of you plan to raise the money for it?’ ‘Mumbai is such an expensive city, where will you find the space?’” But the ball started rolling after Tatiya and Shah met Sunita Jadhav, a social worker at the Tata Memorial Hospital in Parel. Jadhav, who works with terminally ill patients, agreed to become a board member of their project. After making numerous presentations to doctors and pharmaceutical companies, they finally made headway with the Lokmanya Tilak General Hospital. Shah says, “Dr Mamta Manglani, the head of the pediatric department at the Sion Hospital, played a crucial role in building our partnership with the hospital. She not only helped us to get permission from the concerned authorities but also ensured that we got the space.”
The road ahead
Shah and Tatiya have now started a fund raising exercise on crowdfunding platform indiegogo.com. They aim to raise R80 lakh by February 2, 2014. Shah says, “We are also planning to seek government support and tap individuals who would like to make donations.”
Explaining how the centre will function, she says, “Patients can come on their doctors’ recommendation. The centre will be operational from 9 am to 6 pm, five days a week. All the amenities will be provided free of cost. Sion Hospital will provide us with the medical staff. Children can come and stay for the whole day or they can come in for three hours. We are looking to work with around 45 kids every day.” Shah and Tatiya, however, maintain that working with the kids closely will be a deeply emotional experience for them. They say in unison, “When we started working on this project, we got two major reactions from our families and friends in terms of how would we cope with the patients’ deaths. They said that either we will get extremely emotional after seeing a child die or after a point we wouldn’t be affected by death. But we want to be moved. That will help us work harder and better for their cause.”
To contribute for the cause, log on to http://www.indiegogo.com/projects/happy-feet-home--2