Dear friends, we are reaching out to ask for your help.
Zaluzhnyi Ihor, 2 years and 9 months old, has been diagnosed with Duchenne Muscular Dystrophy—a severe and fatal genetic disorder that affects the skeletal muscles and often the heart.
Little Ihor, not even 3 years old, is bravely fighting this rare and devastating illness. Duchenne is a progressive disease that gradually robs children of their ability to walk, move, and eventually even breathe on their own.
We discovered the disease early, at 2 years and 3 months, but now, just a few months later, Ihor can no longer walk properly. He cannot jump, run, or climb stairs.
He is taking Deflazacort (a steroid treatment), which unfortunately is not available for purchase in our country.
Despite the pain, Ihor remains full of life and always smiling.
It is heartbreaking to write this—but without treatment, children with this diagnosis often do not live to see adulthood.
But there is hope.
There are modern therapies available worldwide that can slow the progression of the disease, preserve muscle function, and offer the possibility of a better future. However, these treatments are extremely expensive.
Gene therapy with the drug Elevidys costs $2.9 million. Every dollar matters!
