Hearts behind the Foundation: Prema & Jyoti Sagar

“In the English language, there are orphans and widows, but there is no word for the parents who lose a child.”- Anonymous

Let us begin with a story we once heard.

There was a small kingdom with a wise King. One day news reached the King that a holy man – a sage – was passing through the kingdom. The King rushed to the place where this sage had made camp for the night. The King pleaded with the sage and brought him to the palace. Sage was duly honoured and presented with gifts. The King then asked the Sage for a blessing. Sage sat quiet for a few moments and then said “I bless that you die first, then your children die, and then your grandchildren die”. The King was flabbergasted and speechless. He picked up courage finally and asked why the Sage had given this rather ominous blessing and what was the meaning of it. Sage replied “O’King, this is the most valuable blessing. I am blessing you that you do not experience the death of a child or a grandchild during your lifetime. Because loss of a child is the worst that can happen to anyone.”

Prema and Jyoti Sagar in the early years

Death of a child is not in the natural order of things and events.

37 years ago, on December 20, 1983, we had our second child named Sameer. Immediately after birth, he was detected with a Congenital Heart Defect. 16 hours is the time we got with our son, before he left us. And that too only one of us because post her C-section surgery, Prema was not in a good condition, hence she couldn’t even see Sameer. And those were the days when there were no smartphones or instant cameras – we do not even have a photograph of our Sameer – it all happened so suddenly.

For us, there was perhaps a message in the loss of Sameer. Was it his Karma or ours? Did we deserve it? Or whatever happened was meant to give us the realization of loss and grief and set us on a journey where we could be a source of power, help, and succor to others similarly placed? Loss of Sameer did set in motion a chain of events and thoughts – conscious and subconscious – which ultimately culminated in the formation of Genesis Foundation.

The Missionaries of Charity was established by
Mother Teresa in 1950

The Genesis of the Foundation

Grieving through our loss, we found an outlet in our voluntary work at Missionaries of Charities. We saw human misery and service to humanity at close quarters. We often talked about the trauma and grief of losing a child and what it had meant to us. Conversation would turn to poor parents who could not afford life-saving treatment for their children.

We started to support the treatment of a few orphan children at Missionaries of Charity who were suffering from serious problems. We raised funds from family and friends. This was the beginning and eventually we signed a Deed of Trust in May 2001 under which we formed Genesis Foundation as a not for profit charity. We continued to operate informally at a small scale after that.

Watch Prema Sagar talk about Genesis Foundation

Prema and Jyoti with their children Rahul and Simran

By 2009, we had supported children suffering from a variety of critical medical conditions in the areas of cancer, heart, organ failure, thalassemia and extreme deformities. We worked with orphanages in the Delhi National Capital Region like Missionaries of Charity (Mother Teresa’s Home), Children of the World, Can Support, Handicapped Children’s Rehabilitation Association (HCRA). Our work helped us to establish links with local hospitals like Gangaram Hospital, AIIMS, Escorts Hospital, Batra Hospital and Indian Spinal Injuries Institute.

Prema and Jyoti at Miot Hospital, Chennai
with Dr Robert Coelho

In 2012, we felt that in trying to do too many things, we were losing focus. We decided to streamline our areas of effort to heart, cancer, and thalassemia only. We continued to work and support children with these ailments.

The evolution continued. By the end of 2016, we had realized that Congenital Heart Defects (CHD) was a massively underserved area in our country and lack of avenues for heart disorder treatment also happens to be one of the major causes for infant mortality in India. And then it struck us once more, how poorly informed we were in case of Sameer. In that moment, we decided that Genesis Foundation will be a niche charity only for heart disorder treatment.

The Genesis Foundation family

We are fortunate to have built relationships of trust and confidence with several hospitals at an institutional level and personal level with many doctors who help us deal with requests for support which are channeled through the hospital network. And we are lucky to have a network of donors and CSR partners who have time and again proved to us that empathy is a quality of character that has the power to change the world. On a personal level, we continue to provide funds for meeting the administrative and other overheads. Helping us execute our mission is a team of passionate team members who work to Save Little Hearts because they believe in the cause.

We feel lucky that through Sameer we have been able to bring a change in the lives of 3000+ children and their families. But at the end of the day, we are just the instruments, the medium through which we are called upon to undertake actions and activities ordained by a higher power. Perhaps there is truth when humanitarian and philanthropic activities are described as God’s work.