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‘Over 90% Of Children With Heart Disease Do Not Get Timely Support’

Requiring sophisticated equipment and infrastructure, care for heart disease among children is exorbitant and challenging, and to facilitate care for these children, there is external support required

Photo Credit : PTI


Every year around 220,000 to 250,000 children are born with congenital heart disease (CHD) in India. 90 per cent of these do not get timely support, due to which they are subjected to lifelong disability and even death.

Requiring sophisticated equipment and infrastructure, care for heart disease among children is exorbitant and challenging, and to facilitate care for these children, there is external support required.

Genesis Foundation facilitates medical treatment for critically ill underprivileged children in the areas of heart disorders, for which over 1200 children have been supported. In an exclusive interview with BW Businessworld, Prema Sagar discusses the social impact brought about by Genesis Foundation, specifically in providing medical help for under-privileged children with heart diseases. Edited excerpts:

What are Genesis Foundation’s initiatives in providing medical help for under-privileged children?

Genesis Foundation facilitates medical treatment for critically ill under-privileged children with heart disorders. The support required in the said critical illness varies from specific surgeries (including neonatal), Cath Lab Interventions, along with recovery and recuperation post-surgery. GF, so far, has supported medical treatment of over 1200 critically ill children. The children supported by the Foundation belong to families with an income of less than Rs 10,000 per month and the parents and caregivers are unable to afford treatment of these children suffering from a serious life-threatening ailment.

Our work is done through our four programmes:

HOPE – This programme identifies children who are in need of urgent medical attention and works directly with their families, doctors and guardians.

CARE – Under this programme, we seek to build a network of doctors, hospitals and pharmaceutical companies, committed to saving the lives of critically ill, under-privileged children and work with them to provide medical support to GF beneficiaries.

GIVE – This programme focuses on fund-raising initiatives. It is uniquely designed and aimed at building a community committed to awareness, collaboration and participation of individual and institutional stakeholders – through events, CSR programmes, donations and crowd-sourcing.

LEARN – We have built a repository of current and valuable information around our area of health that we focus on and work closely with i.e. Heart Disorders.

What kind of ailments does the Genesis Foundation provide help for?

For years, we worked on five areas of ailments cardiac disorder, cancer, thalassemia, extreme deformities and post organ transplant treatment. In 2015, we started the process of realignment and narrowed our focus to three areas, cardiac disorder, cancer, and thalassemia. 

In 2016, we achieved the milestone of having facilitated treatment of over 1200 critically ill, underprivileged children. We constantly reevaluate our focus because we want to channel our energies and efforts where we can make the maximum impact. We also choose the toughest battles to fight—every year, between 220,000-250,000 children are born with congenital heart disease (CHD) in India. 

Of these, over 90 per cent don’t get timely support, resulting in lifelong disability or even death. Caring for children with heart disease is challenging and expensive because it requires sophisticated equipment and infrastructure, and very few NGOs work in this area. And in our experience, in the last five years 73 per cent of the cases we supported were of CHD. That is why, in February this year, we shifted our focus from three ailments to just one—heart disorders.

How does Genesis Foundation go about identifying those children who are in need for medical help?

Our primary source of referral are doctors/hospitals, health workers, other NGOs, and our existing beneficiaries, who, having experienced first-hand the kind of support we provide, become the champions of our work and our cause. When we get a referral, we take the case through our process of due diligence to ensure that the case is genuine and in need of our support.

Does Genesis Foundation utilize technology in providing medical help to under-privileged children?

There are several ways that technology plays a role in our efforts to Save Little Hearts. We use technology to spread awareness about the cause—through the website and social media channels. We also make use of technology to raise funds—through the online crowd-funding platform, CAF America and other online avenues.

We are also in the process of developing an app to monitor and track the supported children’s life post treatment so that we can be there if they need further help or even support their rehabilitation back to school and normal life through our other partners.

What are some of the future plans of Genesis Foundation in creating social impact?

While we will continue to do more to support more children, our future plans are in three specific areas:

· Spreading more awareness around the cause so that we can reach more children at the right time. We want to do this in partnership with hospitals through medical camps and other forms of outreach.

· Working with corporates, civil society and the government so that we can get larger government support for tertiary healthcare.

· Make ‘giving’ more than about writing a cheque—make it participative, make people understand how it impacts the giver so that there is a mindset shift, and making more people open to the idea of giving so that there are more donors and supporters of the cause.

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