When we reached her home in Baliyawas (about 30 kms from Gurugram) in the afternoon, Anjali was fast asleep, unaware of the large group of us who were eagerly waiting to meet the little girl. Her family spoke enthusiastically as she slept, commenting on how she has already begun playing with her siblings and was getting her appetite back.
For them, this was the mark of significant progress.
You see, the road to a normal life has not been easy for Anjali or her family. Only two months ago, she had been diagnosed with a life-threatening heart condition. Her family, who had insufficient funds for the necessary treatment, had frantically travelled from hospital to the bank in the hope that they could somehow get her treated. Luckily, a connection with the Genesis Foundation (and their donor community) made the surgery possible.
They were able to help as Genesis Foundation (GF) facilitates medical treatment for critically ill, under-privileged children who suffer from heart disorders. A 100 percent of funds raised by the Foundation via fund-raisers and its donors contributions, are used towards the children’s treatment, consequently liberating the parents from financial burden while giving them hope that their young ones can live through and beat heart disorders.
Anjali’s First Surgery and Her Life Thereafter
Last week, almost a month after her first surgery, we were able to visit Anjali, as she slowly recovered from first of the two surgeries recommended by her doctor. As a father of two daughters, I could not help but empathise with the mixture of relief and concern that Anil and Aman, her parents, were exhibiting.
However, as she woke up and proceeded to greet us with a smile (albeit a bashful one, as she had hardly met so many strangers at once), we were able to reassure Anjali’s family that she could eventually lead a healthy, normal life, as long as proper care was taken during her recovery process.
Heart-Related Disorders in Children
As I reflected on our meeting with Anjali and her family, I was glad to see the genuine impact of the Genesis Foundation’s efforts, but more importantly was struck by how much work was yet to be done. While admittedly I am not a subject matter expert, I am interested in making a difference where I can, and I think the following themes need to be pursued to shape viable solutions.
Congenital Heart Disease (CHD) among children needs to significantly gain salience among all stakeholders - government, hospitals, NGOs/foundations, corporates, you and me.
CHD among children is a serious issue. The Rashtriya Bal Swasthya Karyakram (RBSK) programme launched under the National Health Mission, has enabled significant progress in reducing child mortality rates over the years, but within the broader community engaged specifically in child CHD support, there is acknowledgement that there is yet much work to do in early screening, detection and improving survival outcomes.
From this number a very, very small amount actually get timely treatment, mostly because of paucity of funds.
We must elevate the discussion to give this issue urgent importance. This will then catalyse meaningful actions from multiple stakeholders, as the current situation is untenable.
Need for Individuals to Join Hands
The work of individual actions and NGOs/foundations is laudable, but we need more resources and coordination amongst stakeholders to meaningfully move the needle to “Save Little Hearts”.
Genesis Foundation has supported over 1,200 children so far, thanks to their hospital partners, generous donors and committed founders and team.
I am sure other similar efforts are ongoing in other parts of the country, all of which are vital. But the issue in India is one of scale and we need to work towards high quality, affordable care for a much larger group of children.
To provide timely interventions to all the little lives that can be saved, we must overcome several deficits - infrastructure, expertise in screening and treatment, funds - and it is obvious that this will require:
- An intensified and collaborative effort between government, large corporates, NGOs and individuals who care and want to help.
- Playbooks “lifted and shifted” from countries that have been successful in winning this battle, as well as potentially leveraging the energy and the tech platform based innovation capabilities of healthcare start-ups.
- Education/awareness platforms for both funders and recipients:
It is important that potential recipients are able to identify the condition before it gets too late, and understand what the proper course of action is before and after treatment.
In order for funders and corporate partners to donate or support the cause, they need to understand the nature and scale of the condition.
At an Individual level, donations are important and needed, but “Head, Heart and Hands” involvement is a force multiplier.
As a nation, as we fight for what I call the 3 Ls: Lives (eliminating any potentially avoidable human loss due to illnesses), Livelihoods (education, skills and jobs), Living Conditions (affordable housing, hygiene, water, power) we are making progress, and have lots of ground to cover over the years ahead.
As a positive, I see more and more people in India who are thankful for being privileged in the ‘lottery of life’, and express their gratitude by giving to whatever causes they believe in, as per their individual capacity. I do believe that this is a movement on the rise… and more power to this development!
Having said that, I think if we can supplement cash and in-kind contributions with personal involvement, we can make an even bigger difference. Our experience set, our network and ability to make connections, unlock doors, solve problems and all of it is possible only when we engage ourselves, and we need all hands-on-deck to take large strides on the 3 Ls.
Partnering with institutions like Genesis Foundation, not only through donations, but also through active engagement, can facilitate such involvement.
I look forward to working with the Genesis Foundation to supplement their efforts in the wonderful cause of “saving little hearts”, so we can enable many Anjali’s to realise their fullest potential.
(The writer is the chairperson of Genesis Foundation and has over 34 years of FMCG Industry experience. He recently retired from Pepsico after a 25 year+ association, in a diverse range of assignments in India and overseas.)