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The Joy And Pain Of Running A Home For Terminally Ill Children

By Mansi Shah:

My life was going really well. For eight years, I was with a non-profit working towards educating children from weaker economic backgrounds. Highly satisfying work, awesome people, lovely children, amazing friends, everything a person in her late 20s would want. But then reality hit me hard. I realised I was getting super complacent and needed to explore. With a heavy heart I quit. And landed myself in completely unknown territory – a center for children fighting cancer. If that does not sound scary enough, my job there was to ensure that the children were happy and motivated, through positive engagement. I pretty much didn’t get it. How was one supposed to keep children who suffer from cancer, happy? How would they be engaged after going through such painful treatments, needles and chemo? Why would they play? I had my doubts and apprehensions but I took the plunge nonetheless. And boy was I in for a surprise!

The children were brilliant; they sang, danced, played, and they jumped around everywhere, and I fell in love all over again with what I was doing. I knew that I am making a difference every day. I knew that it mattered to the children to see me every day. By playing with them, I could see that I was giving them a semblance of normalcy of their childhood. But sadly, my stint was short-lived. I was fired for breaking the rules of working at the centre at 10.30 pm at night!

Disillusioned, I thought I would chill for a few months, then look for a job. Yet again, life had other plans. A memory from the cancer centre lingered on, of this boy who died after two years of battling his illness. The hospital would not give his father custody of his body because he had not paid the bill. Truth be told, after his treatment, there was no money left. The social worker at the hospital said nobody would give money for this boy because he is a ‘lost case’. This did not go down too well with me. For me, giving money to that father who lost his 16-year old son child meant giving someone a dignified end. And that is when, along with my friend Abhishek, I decided to start ‘Happy Feet Home‘ (HFH), a hospice that focuses on children who may never make it, one which would work towards improving the quality of life of children living with life-limiting or shortening illnesses.

No Limits Here

Posted on Facebook by Happy Feet Home.
Posted on Facebook by Happy Feet Home.

Children at Happy Feet Home receive holistic healing as they journey through life with HIV/AIDS, thalassemia, cancer and other life-threatening conditions. Here, they are engaged in recreational activities and special therapies that help improve their mental health. We try different forms like music, storytelling, painting and art to help engage them, and tutors help children continue with their academics, as many of them may have to drop out of school. Currently, 15 to 20 children attend the daycare facility every day. Some of them travel for almost one and a half hours, to spend a couple of hours with us. With these children, we have a great scope of intervention and hence we work very closely with their families, and our aim is to ensure that we have an overall impact on a child’s health and wellness.

“I Feel Happy Feet!”

The children come to us in different ways. I remember once seeing a lady crying in the hospital, looking extremely concerned. There was a little boy standing on a weighing machine, who didn’t look like he’d be more than seven years old. He weighed only 14 kilos. I later found out that the lady was his mother, that Vaibhav was 15 years old, and he had given up on life. I immediately made up my mind to take him to the centre. The mother who was also partially paralysed, happily agreed.

The moment he entered, there was a different kind of excitement on his face and his mother said she would bring him here more often. Why? Because she hadn’t seen Vaibhav smile like this in a long long time. He spent three hours doing various things – solving puzzles, colouring, watching cartoon films, listening to music and singing. When it was time to leave, I asked all the children how they felt. When it was Vaibhav’s turn, he said, “I feel happy feet right now!”

I smiled with moist eyes. It was probably the most profound thing I had heard from a child this young. He told me he would come to the hospital every day so I could get him to Happy Feet Home. His mother and I looked at each other and exchanged and assuring smile, which said everything.

Another Day Of Life

Since August 2014, we have been able to register 230 children, many of whom come from low-income backgrounds. Many have also lost their parents to the same illness. So, they live at the mercy of their caregivers. Incidentally, while children are the direct beneficiaries, there are many indirect beneficiaries – parents, caregivers and siblings of the children we work with. Families need counselling and bereavement support, which we offer, especially when a child passes away to help them cope with their loss. Tragically, Vaibhav is one of the children who passed away, and he will not be the last. Loss of life is just one of the many struggles and battles we fight every day. And yes, we also celebrate life, we question, we are elated and often, exhausted. But despite everything, we look forward to working every morning and helping our children enjoy yet another day of life.

Happy Feet Home is constantly in need of sincere people. We need volunteers who can teach children. We need a dance instructor to conduct dance lessons at the centre. We are in need of funds at the moment and hence we are running a crowdfunding campaign. The target is 10 lakhs and we are nowhere close to it. Please help us spread the word, please donate, and connect with us, if what we do has touched a chord in you.

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An ambassador and trained facilitator under Eco Femme (a social enterprise working towards menstrual health in south India), Sanjina is also an active member of the MHM Collective- India and Menstrual Health Alliance- India. She has conducted Menstrual Health sessions in multiple government schools adopted by Rotary District 3240 as part of their WinS project in rural Bengal. She has also delivered training of trainers on SRHR, gender, sexuality and Menstruation for Tomorrow’s Foundation, Vikramshila Education Resource Society, Nirdhan trust and Micro Finance, Tollygunj Women In Need, Paint It Red in Kolkata.

Now as an MH Fellow with YKA, she’s expanding her impressive scope of work further by launching a campaign to facilitate the process of ensuring better menstrual health and SRH services for women residing in correctional homes in West Bengal. The campaign will entail an independent study to take stalk of the present conditions of MHM in correctional homes across the state and use its findings to build public support and political will to take the necessary action.

Saurabh has been associated with YKA as a user and has consistently been writing on the issue MHM and its intersectionality with other issues in the society. Now as an MHM Fellow with YKA, he’s launched the Right to Period campaign, which aims to ensure proper execution of MHM guidelines in Delhi’s schools.

The long-term aim of the campaign is to develop an open culture where menstruation is not treated as a taboo. The campaign also seeks to hold the schools accountable for their responsibilities as an important component in the implementation of MHM policies by making adequate sanitation infrastructure and knowledge of MHM available in school premises.

Read more about his campaign.

Harshita is a psychologist and works to support people with mental health issues, particularly adolescents who are survivors of violence. Associated with the Azadi Foundation in UP, Harshita became an MHM Fellow with YKA, with the aim of promoting better menstrual health.

Her campaign #MeriMarzi aims to promote menstrual health and wellness, hygiene and facilities for female sex workers in UP. She says, “Knowledge about natural body processes is a very basic human right. And for individuals whose occupation is providing sexual services, it becomes even more important.”

Meri Marzi aims to ensure sensitised, non-discriminatory health workers for the needs of female sex workers in the Suraksha Clinics under the UPSACS (Uttar Pradesh State AIDS Control Society) program by creating more dialogues and garnering public support for the cause of sex workers’ menstrual rights. The campaign will also ensure interventions with sex workers to clear misconceptions around overall hygiene management to ensure that results flow both ways.

Read more about her campaign.

MH Fellow Sabna comes with significant experience working with a range of development issues. A co-founder of Project Sakhi Saheli, which aims to combat period poverty and break menstrual taboos, Sabna has, in the past, worked on the issue of menstruation in urban slums of Delhi with women and adolescent girls. She and her team also released MenstraBook, with menstrastories and organised Menstra Tlk in the Delhi School of Social Work to create more conversations on menstruation.

With YKA MHM Fellow Vineet, Sabna launched Menstratalk, a campaign that aims to put an end to period poverty and smash menstrual taboos in society. As a start, the campaign aims to begin conversations on menstrual health with five hundred adolescents and youth in Delhi through offline platforms, and through this community mobilise support to create Period Friendly Institutions out of educational institutes in the city.

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A student from Delhi School of Social work, Vineet is a part of Project Sakhi Saheli, an initiative by the students of Delhi school of Social Work to create awareness on Menstrual Health and combat Period Poverty. Along with MHM Action Fellow Sabna, Vineet launched Menstratalk, a campaign that aims to put an end to period poverty and smash menstrual taboos in society.

As a start, the campaign aims to begin conversations on menstrual health with five hundred adolescents and youth in Delhi through offline platforms, and through this community mobilise support to create Period Friendly Institutions out of educational institutes in the city.

Find out more about the campaign here.

A native of Bhagalpur district – Bihar, Shalini Jha believes in equal rights for all genders and wants to work for a gender-equal and just society. In the past she’s had a year-long association as a community leader with Haiyya: Organise for Action’s Health Over Stigma campaign. She’s pursuing a Master’s in Literature with Ambedkar University, Delhi and as an MHM Fellow with YKA, recently launched ‘Project अल्हड़ (Alharh)’.

She says, “Bihar is ranked the lowest in India’s SDG Index 2019 for India. Hygienic and comfortable menstruation is a basic human right and sustainable development cannot be ensured if menstruators are deprived of their basic rights.” Project अल्हड़ (Alharh) aims to create a robust sensitised community in Bhagalpur to collectively spread awareness, break the taboo, debunk myths and initiate fearless conversations around menstruation. The campaign aims to reach at least 6000 adolescent girls from government and private schools in Baghalpur district in 2020.

Read more about the campaign here.

A psychologist and co-founder of a mental health NGO called Customize Cognition, Ritika forayed into the space of menstrual health and hygiene, sexual and reproductive healthcare and rights and gender equality as an MHM Fellow with YKA. She says, “The experience of working on MHM/SRHR and gender equality has been an enriching and eye-opening experience. I have learned what’s beneath the surface of the issue, be it awareness, lack of resources or disregard for trans men, who also menstruate.”

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A Computer Science engineer by education, Nitisha started her career in the corporate sector, before realising she wanted to work in the development and social justice space. Since then, she has worked with Teach For India and Care India and is from the founding batch of Indian School of Development Management (ISDM), a one of its kind organisation creating leaders for the development sector through its experiential learning post graduate program.

As a Youth Ki Awaaz Menstrual Health Fellow, Nitisha has started Let’s Talk Period, a campaign to mobilise young people to switch to sustainable period products. She says, “80 lakh women in Delhi use non-biodegradable sanitary products, generate 3000 tonnes of menstrual waste, that takes 500-800 years to decompose; which in turn contributes to the health issues of all menstruators, increased burden of waste management on the city and harmful living environment for all citizens.

Let’s Talk Period aims to change this by

Find out more about her campaign here.

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A former Assistant Secretary with the Ministry of Women and Child Development in West Bengal for three months, Lakshmi Bhavya has been championing the cause of menstrual hygiene in her district. By associating herself with the Lalana Campaign, a holistic menstrual hygiene awareness campaign which is conducted by the Anahat NGO, Lakshmi has been slowly breaking taboos when it comes to periods and menstrual hygiene.

A Gender Rights Activist working with the tribal and marginalized communities in india, Srilekha is a PhD scholar working on understanding body and sexuality among tribal girls, to fill the gaps in research around indigenous women and their stories. Srilekha has worked extensively at the grassroots level with community based organisations, through several advocacy initiatives around Gender, Mental Health, Menstrual Hygiene and Sexual and Reproductive Health Rights (SRHR) for the indigenous in Jharkhand, over the last 6 years.

Srilekha has also contributed to sustainable livelihood projects and legal aid programs for survivors of sex trafficking. She has been conducting research based programs on maternal health, mental health, gender based violence, sex and sexuality. Her interest lies in conducting workshops for young people on life skills, feminism, gender and sexuality, trauma, resilience and interpersonal relationships.

A Guwahati-based college student pursuing her Masters in Tata Institute of Social Sciences, Bidisha started the #BleedwithDignity campaign on the technology platform, demanding that the Government of Assam install
biodegradable sanitary pad vending machines in all government schools across the state. Her petition on has already gathered support from over 90000 people and continues to grow.

Bidisha was selected in’s flagship program ‘She Creates Change’ having run successful online advocacy
campaigns, which were widely recognised. Through the #BleedwithDignity campaign; she organised and celebrated World Menstrual Hygiene Day, 2019 in Guwahati, Assam by hosting a wall mural by collaborating with local organisations. The initiative was widely covered by national and local media, and the mural was later inaugurated by the event’s chief guest Commissioner of Guwahati Municipal Corporation (GMC) Debeswar Malakar, IAS.

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