Help Little Ali Keep Running and Dreaming

When my 5-year-old son Ali dreams of becoming a race car driver one day, I smile. But deep inside, I feel a fear I cannot describe. Because my little boy dreams of driving the fastest cars, while I am afraid that one day he may no longer be able to run.

My name is Sabah, and I am Ali's father. He is a cheerful, curious, and energetic little boy who loves cars, goes to kindergarten, and plays with his one-year-old sister. He can still walk and run. And that is exactly why every step he takes is so precious to me.

I will never forget one of our walks together. We walked 3.7 kilometers side by side. For some people, that may seem like something completely ordinary. For me, it was one of the most precious moments I have ever shared with my son, because I know what the future could take away from us.

Ali has Duchenne muscular dystrophy - a severe genetic disease that progressively weakens the muscles.

The first signs of concern appeared when we noticed that certain movements were difficult for him. He could not climb stairs without support, he needed to use his hands to push himself up from the floor, and he could not jump with both feet at the same time.

We hoped he simply needed more time. But after numerous medical examinations and two months of waiting, the genetic test results confirmed the diagnosis we feared most.

Today, Ali is still enjoying his childhood. But his mother and I live with the fear of what may happen in the years ahead. I watch him playing with his little sister and dream of seeing them together as they grow older - walking, playing, and sharing their lives.

Ali is currently taking corticosteroids. We sought specialized medical care and received a preliminary quotation for Elevidys gene therapy, costing $2,900,000. Further medical tests are needed to determine whether this treatment is suitable and safe for him. It is not a guaranteed cure.

This amount is far beyond what our family can afford. But I cannot stop searching for options for my son.

Please, help Ali! He can still run, laugh, and dream. I want to do everything possible to help him preserve as much of his childhood, independence, and mobility as possible.

I cannot promise what the future will bring. But I can ask you to stand by our side and help us secure the necessary medical evaluation and, if he is approved, access to the proposed treatment.

Because while my Ali dreams of becoming a race car driver, I will keep fighting for every step he takes.