SPINAL MUSCULAR ATROPHY DISEASE
We are reaching out to you with heavy hearts but hopeful spirits, to share the story of our beloved daughter, Rhea.
Rhea is 1 year and 11 months old — a bright, beautiful child who lights up our lives every day. But unlike most children her age, Rhea is unable to walk or move independently. After countless visits to doctors and specialists, we received a heartbreaking diagnosis: Rhea has Spinal Muscular Atrophy (SMA) — a rare, genetic neuromuscular disorder that affects the motor nerve cells in the spinal cord. Over time, SMA causes progressive muscle weakness, difficulty in swallowing, and even breathing challenges. Without treatment, it is often fatal in early childhood.
While there is no cure for SMA, there is hope. A groundbreaking gene therapy called Zolgensma offers the possibility to stop the disease from progressing. This one-time treatment can save Rhea’s life and give her the chance to grow up, move, play, and experience the world as every child deserves.
However, we are facing two major obstacles:
The Cost: Zolgensma is one of the most expensive treatments in the world, priced between $2 million and $2.5 million. As a family, we cannot afford this on our own — and that is why we are humbly asking for your help.
Time: Zolgensma is only approved for children under the age of 2, and Rhea is now 1 year and 10 months old. This means we have just a short window left to secure the treatment before it’s too late. Every day counts — and time is slipping away.
We are doing everything we can, but we cannot do it alone. Every contribution, no matter the amount, brings us one step closer to giving Rhea the life she deserves. If you are unable to donate, please consider sharing our story with your network. Your support — in any form — could truly save her life.
With gratitude and hope,
