Guest Voice: Hussein’s journey is symbolic of our hope for peace

Our journey began long before my son, Hussein, was born. Due to a family history of SMA, my husband underwent genetic testing to be sure he was not a carrier. We received news that he was clear, and based on that reassurance, I was not tested. We believed the road ahead was safe, but life was quietly preparing a very different story.

Amal Khdour’s son, Hussein, who was born with SMA type 1, is thriving after receiving gene therapy. (Courtesy of Amal Khdour)

Hussein was born strong and active, just like any healthy baby. But after only a week, subtle weakness began to appear. He could no longer bear weight on his legs.

At 1 month old, a neurologist suspected SMA and ordered genetic testing. The diagnosis came quickly and definitively. When my husband repeated his genetic test, and I also took one, the truth was revealed: We were both carriers, despite the false report we had relied on.

At 3 months old, Hussein began taking Evrysdi (risdiplam). Just one month later, at exactly 4 months old, he received gene therapy in China as part of an experimental study. It was the most important, life-changing decision we have ever made. That therapy gave Hussein a real chance to live, to grow, and to surpass what is typically expected for a child with SMA type 1.

Today, Hussein can sit independently, breathe without support, and move his hands well. Yes, weakness remains, but his determination is stronger than the illness itself. We continued intensive physiotherapy and later restarted Evrysdi for a while, but had to stop due to elevated liver enzymes.

Despite everything he has endured, Hussein is my greatest pride. He is bright, warm, affectionate, and incredibly social. He loves having people around him and hates being alone. If someone leaves the room, he immediately calls out as if his heart is tied to ours, reminding us that connection is his comfort and strength.

Amal Khdour hopes the story of her son, Hussein, pictured here, will help other SMA families. (Courtesy of Amal Khdour)

His personality, his curiosity, the way he clings to life, and his smile that defies every challenge — these are what keep me going every single day.

We are now in Palestine, where we have begun establishing the SMA Palestine Association, and I was chosen as one of the founding members. I support many families, share my experience, guide them medically, and connect them with specialists worldwide. I feel that my son’s journey has become a message — one that now guides others and may save lives.

Today, all I wish for is that Hussein, and all children, may live safely, breathe freely, play, and grow in health. Peace. Simply peace.

You can follow Hussein’s journey on Facebook and Instagram to see updates, and we welcome your support.

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