With great anticipation, my husband and I kissed our four-year-old daughter goodbye and left to welcome her baby brother. We wanted her to know the richness of sibling love, the companionship, the laughter, and the lifelong bond only siblings share.
What we didn’t realize was that she would spend the next several years navigating chaos, while her parents weathered a storm no one saw coming. During my C-section, as I giddily anticipated meeting my baby, I didn’t realize that the most heartbreaking chapter of my life was about to begin. I would witness my son suffer in ways I had never imagined possible.
Yuvaan was in my arms for twenty minutes before he needed a NICU to survive. We spent two months there. Every morning, upon waking at 4 am to pump breastmilk, I’d call the NICU nurses, praying he was alive and yearning to get an update on his health. Since then, he has also endured three surgeries and two hospitalizations. Day to day, he is G-tube fed, suffers from severe reflux, and spends about twelve hours a week in therapy.
“I grieved my child’s suffering while wishing, every single day, that I could trade places with him.”
To those who love him…
Yuvaan is perfect.
He is the apple of his sister’s eye. We call him her little lamb. When I walk into a room, he insists on being cuddled within ten seconds, or chaos ensues (and he makes good on the threat). He’s a budding musician who believes anything is an instrument if you try hard enough. If a cabinet is open anywhere in the house, Yuvaan will find it and joyfully empty every last item. We call him our Little Destroyer.
It’s because we see his perfection so clearly that we are passionate about driving therapeutic development. Not to change who he is at his core, but to help him and other children with NIPBL-related Cornelia de Lange syndrome, flourish. I never want Yuvaan or other children with CdLS to feel less than anyone else. Here are my hopes and prayers for these rare children.
How the foundation began
That is why my family and I are pursuing therapeutics. Every conversation, every experiment, every partnership we build moves affected children closer to relief from suffering. Our journey began with a simple question: what is it going to take? I'm very fortunate Yuvaan's family includes three people who have spent their careers in exactly this world: his grand-aunt Anjali Shah, a genomics and molecular biology leader at Thermo Fisher; his grand-uncle Sujal Shah, a biotech founder and former CEO of CymaBay Therapeutics; and his grand-aunt Parul Baxi Shah, a clinical pharmacist at Regeneron.
Our questions have brought extraordinary people into our lives. We’ve been guided by scientists, founders, and parents who walked this road before us. We have been honored by an incredible Scientific & Strategic Advisory Board of renowned experts. What once felt like an impossible dream is slowly taking shape.
“Let hope and effort be your offering.”
The Bhagavad Gita
Together, we can create a world where a child born with CdLS doesn’t endure the same suffering
For Yuvaan. For every child, parent, and family on this CdLS journey.
With hope, Shivika — mother to Yuvaan, founder of the NIPBL Therapeutics Foundation