The Humanitarian Foundation “BUDI HUMAN – Aleksandar Šapić”

is raising funds for Kosta Lešević (2020).

Kosta has been diagnosed with cerebellar atrophy (Atrophia cerebelli), reduced volume of supratentorial white matter (Hypoplasia substantiae alba supratentorialis), specific developmental disorder of motor function (Disordo evolutionis functionis motoricae specificus), PMPCA gene mutation, epilepsy (Epilepsia), muscle dystonia (Dystonia musculorum), dysphagia (Dysphagia), strabismus (Strabismus), nystagmus (Nystagmus), as well as muscle hypotonia and hypertonia (Hypotonia et Hypertonia musculorum).

During the first months of life, Kosta developed typically, but due to increased muscle tone he was under medical supervision. After contracting COVID‑19 at 17 months of age, he experienced a sudden and severe regression, losing previously acquired motor and speech functions. Further diagnostics confirmed an extremely rare PMPCA gene mutation, identified for the first time precisely in Kosta, accompanied by epilepsy, muscle dystonia, dysphagia, strabismus, nystagmus, and both hypotonia and hypertonia.

Kosta’s treatment and medical monitoring continue abroad, in a specialized clinic for rare diseases. Thanks to the persistence of his family and the support of compassionate individuals, the first phase of developing a personalized gene therapy tailored specifically to his unique genetic mutation has been funded. Additional financial resources are required for the continuation of research, development, and future application of this therapy.

Funds are needed for the development and application of personalized gene therapy, diagnostics, medical treatment, medication procurement, physical therapy, rehabilitation in Serbia and abroad, speech and special‑education therapy, sensory and psychomotor exercises, hippotherapy, specialist examinations, orthopedic aids, as well as travel and accommodation expenses during treatment.

For Kosta’s progress! Let’s be humane!

Help Kosta!