Spinal surgery for Sasha

For children living with Spinal Muscular Atrophy, severe scoliosis is far more than a postural challenge, but a life-threatening complication that compresses vital organs and severely compromises breathing.

Recently, Sasha Samus underwent an intricate 16-hour spinal reconstruction at the Spinex Center. His Grade 4 scoliosis was exceptionally severe featuring rigid 70- and 90-degree curvatures, making the operation extraordinarily complex. His lead surgeon, Dr. Pylypchuk, performed meticulous, life-saving work to stabilize Sasha’s spine and relieve years of pressure on his lungs and internal organs.

This is precisely where our SMA Program steps in. When a child’s health hangs in the balance, we prioritize funding time-sensitive surgical procedures. As soon as Sasha’s surgical plan was finalized, BfS contributed $7,000 toward his nearly $20,000 surgery, ensuring he received this urgent intervention without delay.

While the surgery itself was a success, Sasha faced a critical setback in the ICU when one of his long-compressed lungs collapsed, causing a spontaneous pneumothorax. What began as a physiological adjustment to his expanded chest cavity quickly escalated into a high-stakes battle involving weeks of intensive care, re-intubation, and mechanical ventilation.

Today, Sasha is finally stable, it’s a brand new day for our superhero! However, the recovery journey is far from over.

To help his lungs fully expand and heal, Sasha requires continuous non-invasive respiratory support, especially while sleeping. The optimal option would be Löwenstein PRISMA VENT non-invasive ventilator for home use, and his family is currently seeking €5,000 financial support to secure this critical device.

We remain side by side with Sasha and his family as he re-learns to breathe easier and regains strength day by day. We’ve already reached our partners for help and call you to join us.

Stand with Sasha and help us sustain our life-saving SMA Program.