The birth of Aara Project
July 23, 2022 | Contributed by Priyal Guliani
Every time I sit down to write about my daughter in heaven, I feel overwhelmed by a whirlwind of emotions, because as a human being, as a mother I was never programmed to face a loss this devastating.
Our little Aara, our first-born’s first birthday was a day that reminded us acutely of our loss. But when we look back on the four months she spent with us in our lives, it was for a purpose and we could not let go of that even in her physical absence. My husband and I knew, the only way to make sense of our own grief, was carrying forward our daughter’s legacy and helping #SaveLittleHearts.
How it started
February 7th, 2017 marked the start of the Aara Project with Genesis Foundation, to carry the legacy and purpose of our daughter who taught us more than anyone else ever could and ever have.
In the days that we saw Aara bravely fight her rare congenital heart defect and innumerable complications and procedures thereof, the reality of us being able to afford the costs versus many parents around us in the same boat, but also financially drained, never escaped us.
The entire journey, from the day she came into our lives, showed us those corridors of acute stress that a parent, whose child has been diagnosed with a serious ailment has to go through. The mounting hospital bills and medical costs only make it more difficult.
With such limited awareness around heart defects in children, any kind of support is limited. In the four months that we were in the hospital, we came across almost every third family running pillar to post to get funds for their child’s treatment. During our time at the hospital, we managed to support one such family through Congenital Heart Disease donation raised via our friends and family.
A month later when our daughter passed on and the boy we had helped survived and thrived, our doctors reminded us how our daughter had come for a purpose.
It became clear in our head we needed to work towards supporting treatment of heart disease in children.
Working with Genesis Foundation
As were grieving our loss and trying to make sense of the what and why of what had happened with us, we made a life-changing decision to move out the country. During this time, I received a condolence message from Prema Sagar who is the one of the Founder Trustees of the Foundation. We had never met before, but I knew much about her, as she is a pioneer and one of the most respected communication professionals in India.
Before that, I had interacted with a representative from the Foundation – Srivatsan who would come every other day to meet families who were being supported financially. Looking back, I often wonder, whether it was a chance interaction or destiny, but I expressed my desire to meet Prema.
What followed was a heart-to-heart between two mothers who had lost their children to a Congenital Heart Defect. As I was moving countries and I did not want to get into multiple regulatory requirements of starting a support platform for treatment of heart disease in children, Genesis Foundation helped me launch the Aara Project under the Foundation’s projects. Since the Foundation’s commitment was something I had seen with my own eyes, we decided to raise funds that would be contributed to the Foundation’s pool of Congenital Heart Disease donation.
Since then, it has been five years that the Aara Project has thrived on the Foundation’s platform, and I couldn’t have been more grateful for all the support we have received to honour and carry my daughter’s name and purpose forward.
Along with awareness activities on congenital heart disease, together, we have been able to support the treatment of more 50 children until now.
And this is only the beginning of many things that I hope to accomplish as I celebrate my daughter and the birth of The Aara Project.