Terminal illness – these two words strung together have the power to unsettle even the toughest ones, and it only gets harder when they come to be associated with a child.
This is where Mansi Shah is trying to make a difference.
The 37-year-old Mumbai resident believes that no matter how much, or little, time a child has left, his or her life deserves normalcy and on occasion, even celebration. This philosophy forms the cornerstone of Happy Feet Home, India’s first hospice for terminally ill children.
An Arts graduate with a major in History from V.G. Vaze College in Mumbai, Mansi took up a course in Early Childhood Care and Education post her graduation from SIES, Sion. Some certificate courses in counseling followed as Mansi realised early on that she wanted to direct her efforts in the social sector.
A stint with The Akanksha Foundation gave Mansi direction, allowing her to not only explore her own potential for management, but also her appetite for service.
Working with the St. Jude India ChildCare Centre and Sing A Smile formed the basis of what Happy Feet Home is today.
Mansi met Abhishek Tatiya at Sing A Smile, and the duo went to jointly set up Happy Feet Home in August 2014 in the Mumbai suburb of Sion.
The idea came from Mansi’s friend Dev Tayde, who observed there were limited options for children living with terminal illnesses. “I immediately shared the idea with Abhishek, and he was equally excited. We had endless discussions, many sleepless nights, several plans, and even more meetings to set up Happy Feet Home,” she says.
All of their friends and family came out in full support of this idea, even as Mansi harboured immense self-doubt about whether the ailing would see value in attending a centre of this nature - but this further drove her to make sure her model is one-of-a-kind, and makes the experience truly meaningful for the beneficiaries.
The day-care hospice came to be supported by five staffers and five volunteers. The organisation offers respite, and quality day care services to over 300 children from the weaker sections of the society who are under palliative care.
“Our services revolve around their health (good nutritious food and mental health) and other activities which will help them grow, understand themselves, and be independent,” explains Mansi.
As the name suggests, Happy Feet Home is no morose place reeking of tragedy, but one filled with merriment. “People are pleasantly surprised when they visit us and see the children in action - their energy, the laughter. HFH is a happy place for happy people,” says Mansi.
In its initial days, Happy Feet Home started with a daycare, and Mansi and Abhishek hoped to have children in batches of two hours each. They consciously steered clear of providing meals to keep away the risk of infection.
“The children refused to go home! We asked them to bring food from home, and we saw the quality and quantity was poor and insufficient, so, we started providing food. It was a sight to see them eat a wholesome meal for the first time!” says Mansi.
Mansi and Abhishek visited the Sion hospital’s Pediatric Centre of Excellence (PCoE) unit every day to talk to the children and their caregivers about HFH.
“The initial reaction from most of the people was fairly discouraging. They questioned what two youngsters with no medical qualification, no money, and no operational space were doing in the field of palliative care. We didn’t give up. Once we would get the children to the centre, they would see what we were talking about, because the set-up, the energy were very positive. We soon had a few children who would come on a daily basis,” she says.
As word spread, more children started coming by. Mansi, however, wanted more. “I wanted these children to come to the center and do more with their time. For how long will you enjoy playing the same games or watch movies? With this we started getting involved in their academics. We learnt that a few children had dropped out of school, so we started looking for vocational courses for them,” she says.
To resolve their pain points at a more meaningful level, Mansi also offers one-on-one, group, and family counseling, healthy meals, bereavement support, and therapy for patients using various art forms - music, movement, painting, storytelling, etc. HFH also conducts routine health checks to prevent other illnesses, and tries to sponsor medicines for those who cannot afford them.
Happy Feet Home also plans to start a work-from-home skill-based service for caregivers as many are daily wage workers who would miss out on a day’s pay every time they take their child to the hospital.
Mansi claims that with nutritious meals and monitoring of medication, there has been an improvement in the health of the children who attend the center regularly. Even children on Anti-Retroviral Treatment (ART) have shown a marked improvement on parameters like height and weight .
Happy Feet Home’s work has attracted many wanting to extend a hand. Recently, AirVistara sponsored the travel of 17 children for a day trip to Delhi in June this year. “Since the children had never been on a flight, this was a momentous occasion for the home,” says Mansi.
Happy Feet Home – which is registered as charitable trust - has seen a total of 3,240 children having attended activities till date. The organization is mostly funded through Give India, individual donors, crowdfunding, and by a corporate donor. The two crowdfunding campaigns Rs 11 lakh and Rs 10 lakh respectively. HFH has also formed a partnership with KARO Charitable Trust. “They take care of all our nutritional requirements. We still need money. We are still falling short of 25 lakhs annually,” Mansi reveals.
The greatest obstacle for Happy Feet Home, though, is finding new real estate to address its growing popularity. “We were hit by the recent floods in Mumbai - there was knee-deep water inside the centre. All our mattresses, pillows, cushions, food and art supplies were destroyed,” she says. A Facebook post had people pitch in to help and get the organisation back up on its happy feet in no time.
The focus for Mansi now is on strengthening the operations and creating a sustainable fundraising model. Another project in the pipeline is to start a strong support group wherein children can reach out to other children and help them find hope and positivity. “Next year, we would like to move into a larger space and substantially increase the number of children we serve. And naturally, we are looking to grow beyond our home in Mumbai,” says Mansi, signing off.