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

Posted on July 21, 2016 in Health and Life

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 everyday. 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 everyday 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 everyday. 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 the 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.

Youth Ki Awaaz is an open platform where anybody can publish. This post does not necessarily represent the platform's views and opinions.