Hope for Vihaan: A Journey of Resilience and Discovery
Born on Valentine's Day in 2015, Vihaan is not just our Valentine's baby but a true warrior battling the rare Cornelia de Lange Syndrome (CdLS). His condition, resulting from a spontaneous mutation on the SMC3 gene, presents extraordinary challenges, affecting every vital organ. Despite these hurdles, Vihaan's laughter and zest for life remind us daily of the incredible strength and joy in his journey.
A very rare genetic disorder affecting Vihaan’s every vital organ
In the past eight years, Vihaan has bravely navigated a world different from most. Simple activities like talking, eating, and moving, which many take for granted, are herculean tasks for him. Yet, his hours in therapy sessions are marked by an eagerness to embrace life fully. He is not just our son; he is our hero, inspiring us to enrich our lives and the world, reflecting the very essence of hope and perseverance.
A Hero's Tale
In our relentless journey to provide Vihaan with a semblance of normalcy, we've navigated a path filled with hope and uncertainty. From countless doctor visits across the country to intensive therapy sessions encompassing speech, occupational, physical, feeding, sensory and behavioral therapies, our family's dedication knows no bounds. Each step is a testament to our unwavering commitment to Vihaan's well-being.
Monumental Efforts for a Brighter Future
These efforts, while extremely challenging, fuel our hope for a future where Vihaan can embrace life's joys without limitations. We dream of a day when he can engage effortlessly with the world around him, a day when the word 'normal' redefines itself in his life. Our journey is far from over, but it's a path we tread with determination, propelled by the belief that every challenge brings us closer to a breakthrough, not just for Vihaan but for all children grappling with CdLS.
Always smiling…
Facing Today, Fostering Tomorrow
Currently, the understanding of SMC3-CdLS is limited, leaving us without effective treatment options. But we refuse to let this be the end. With recent advances in biomedical science, we see a beacon of hope. We aim to spearhead research into SMC3-CdLS, unraveling its mysteries for a future where effective treatments are a reality.
Be the Miracle Vihaan Deserves
Your support goes beyond aiding Vihaan; it's a beacon of hope for all children with CdLS. Every donation directly contributes to critical research specifically for Vihaan's condition, advancing our understanding of CdLS. This research not only brings us closer to potential treatments for Vihaan but also offers hope to many other children affected by this rare syndrome.
By donating, you become a vital part of a journey towards a brighter future—a future where children like Vihaan can overcome the barriers of their condition and embrace life’s full potential.
He is our little trooper
With so many aspirations in life
Join Us in Giving Hope
Please follow this page for goals and deliverables.
Advancements in biomedical science bring us closer to treating Cornelia de Lange Syndrome (CdLS), a condition currently without a treatment. Your donation fuels this hope, directly contributing to research on SMC3-CdLS, which could lead to life-changing treatments for Vihaan and others with CdLS. Every dollar is a step toward a future where children with CdLS can enjoy a fuller life. Follow our progress and see how your support makes a difference. Donations through the CdLS Foundation are targeted for this research and are tax-deductible.