Fighting SMA – A Unique Challenge

From the moment Vasilisa was born, her parents dreamed of simple yet precious milestones: watching her take her first steps, playing on her bike, and cheering her on as she grew into a strong, confident little girl. But Vasilisa’s life has taken a different path. She was diagnosed with spinal muscular atrophy (SMA) type 1, a rare neuromuscular disease that gradually robs strength, mobility, and even the ability to breathe or swallow. Every day is a new challenge for her.

Faith and Unbreakable Spirit

Currently, Vasilisa cannot walk, sit, or hold her head up without support. Every activity, from eating and bathing to repositioning in bed, relies entirely on her parents and caregivers. Yet, despite her physical limitations, her spirit remains unbroken. Her eyes sparkle with curiosity and love, her smile lights up every room, and her laughter, though gentle, warms the hearts of everyone around her. Vasilisa proves that even in the face of adversity, the human spirit can remain resilient and vibrant.

Precious Moments and Hope

As Vasilisa’s condition progresses, her parents cherish every precious moment with her. Heartbreakingly, gene therapy that could slow SMA progression came too late for her, as her condition had advanced beyond the point of effectiveness. Still, her parents refuse to give up. They continue to fight to provide her comfort, happiness, and the best possible quality of life. While she may not run and play like other children, her family is determined to help her live fully in every moment.

Small Steps, Big Triumphs

Vasilisa’s resilience is truly inspiring. Recently, she used an electric wheelchair for the first time—a milestone that may seem small to some but is monumental in her journey. Despite daily physical challenges, Vasilisa continues to push forward with hope, radiating positivity to her family. She is a true fighter, and every new challenge is met with strength beyond her years.

Care Costs and the Need for Support

However, the road ahead remains challenging, particularly in terms of care costs. She requires specialized equipment, from a customized electric wheelchair and communication devices to rehabilitation services and ongoing medical care—all of which are a significant financial burden. Her family cannot bear this alone. They are reaching out to the community, hoping for support to help Vasilisa continue living with comfort, hope, and joy.

A Call to Action

Her mother, filled with love and concern, pleads: “Please don’t leave us alone.” Every contribution, kind word, and act of support helps ease the burden and keeps Vasilisa’s world bright. Your support is more than financial—it gives her the chance to live with dignity and joy, continue dreaming, laughing, and inspiring everyone she meets.

With love and compassion from the community, Vasilisa’s story can continue—not as a tale of loss, but as one of light, strength, and hope. Every day she spends with her family is a gift, reminding us that even in the face of overwhelming challenges, there is still beauty and joy in life. Her parents will do everything to support her, but they need a community that believes in the power of love, resilience, and every child’s right to live with hope, no matter the circumstances.

Let’s come together to help Vasilisa continue her journey. Every donation, every word of encouragement can make a profound difference in her life. Together, we can give Vasilisa the chance to live a full life, filled with love, joy, and endless possibilities.