This couple lost their 1 year old daughter to a rare disease. What they did next will melt your heart!


Sandeep and Neha with their daughter Zarouhi
Sandeep and Neha with their daughter Zarouhi

Middle aged married couple Sandeep and Neha were living a happy life. They had successful corporate careers with various multinationals, had financial security and most importantly, had a beautiful daughter, Zarouhi, born in 2015. But, the pall of sadness didn’t waste any time to cover their streak of happiness. Zarouhi was born with a rare liver disorder called Biliary Atresia, in which one or more bile ducts are abnormally narrow, blocked or absent. According to estimates, 1 in every 15,000 infants can be affected by this disorder. Zarouhi required an urgent liver transplant to survive and her father donated a portion of his liver to save his daughter. However, the liver was rejected by Zarouhi’s body. The doctors were considering a second liver and then the couple reached out to public for organ support; over 200 supporters from the general public came forward to be tested for possible liver donations.

However, due to development of sepsis, a severe blood infection, Zarouhi left the world on 9 September 2016, after a long battle with infection and organ failure.

Zarouhi

“When you go through hardships in life, you can be sad about it, go into depression; or the second option which we decided to take, was to take the inspiration from Zarouhi and decided to provide strength to others” Sandeep said with a valiant diction. “We took our strength from her. Even in her illness, with all her organs failing, she always had a smile on her face. She was so brave” added Neha. It was this rejuvenated strength stemming from pain that led Sandeep and Neha, along with their colleague and close friend Andy, to start a foundation to provide financial and emotional assistance to children diagnosed with life threatening medical conditions. Named as ‘Bless a Braveheart Foundation’, this organisation wishes to extend the message that lack of money and resources should not stop these innocent souls from living a life they deserve. “This foundation is a tribute to the courage of their daughter Zarouhi who struggled for over 10 months of her life.” says Neha and Sandeep.

Bless a Braveheart Foundation functions through three basic pillars – The first step is aimed at providing financial assistance to the parents of the child for surgery and treatment. The second pillar is providing emotional and mental support to the parents with the help of online and face-2-face support groups. Third, the foundation aids the parents and closed ones in the bereavement process in case of a death. Beyond these, the foundation funds medical research for rare, chronic disease in order to support advancement in medical treatment for such diseases.

The foundation initially started with a seed capital from the founders, and then went through the phase of reaching out to family and friends and ultimately to external sources. It currently holds a significant amount of donations in its account after four months from its inception. All donations from the foundation are directed towards supporting children in need of financial assistance, undergoing treatment at National University Hospital, Singapore. The fund distribution is managed and allocated by National University Hospital Systems Fund Limited, an Institution of Public Character under NUHS.

Sandeep and Neha, both having worked for a quite a number of years in corporates, moved to Singapore in 2015 and currently, while Sandeep balances his corporate career along with the work for the foundation, Neha has made a complete move to the social sector with setting the strategic direction for the foundation.

The immediate goal for the foundation is to secure ‘charity status’, a key recognition, in Singapore for which they have filed an application and expect to hear back in June this year. After gaining a charity status, they intend to approach corporates for financial backing and organize awareness events in Singapore like marathons, cycling events, media campaigns. And moreover, as Neha puts it, “Our vision is not to get as much money as possible, but to connect with people who are generous enough to come forward and inspire hope amongst children, who may not even have the chance to live. I think that is what matters and that is the principle of the foundation”.

Their subsequent goals in 2018 involve moving towards more community outreach, recruiting more volunteers, initiating collaborations and spreading outreach into the number of cases they are able to support this year. For an organisation this young, their impact on the lives of children striving for survival amidst all odds, is to be felt soon as they make their first transfer to the NUHS Fund Limited within the next two months.

Individuals and charities from all around the world are welcome to contribute to this noble cause either financially or through their experience, time and awareness.

To contact Sandeep, Neha and Bless a Braveheart foundation, please click here 

PARTHABI CHOUDHURY | TOC

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