Unique Tymofii

Meet Tymofii, a unique 3-year-old boy and the ONLY child in Ukraine diagnosed with a mutation in the WARS2 gene, associated with childhood dystonia-parkinsonism type 3 and NEMMLAS.

NEMMLAS, or neurodevelopmental disorder with mitochondrial dysfunction and abnormal movements, lactic acidosis, and potentially seizures, is characterized by a range of symptoms including delayed psychomotor development, abnormal motor function, including hypotonia, dystonia, ataxia, and spasticity, as well as metabolic issues. Currently, Tymofii can hold his head up on his own but cannot yet roll over, crawl, sit, walk, or talk. 

Despite the challenges of NEMMLAS, he fights every day. His days are filled with physical rehabilitation and speech therapy sessions, where he shows incredible determination and progress.

Unfortunately, there’s currently no cure for this disease, but ongoing therapies and medical support are crucial for improving patient’s quality of life.

Thanks to BfS, Tymofii has received a vital rehabilitation course, bringing him closer to a fuller life. Let’s support his journey and celebrate his unwavering spirit!

Meanwhile, our Medical Support Program continues supplying the most needed medical equipment and medications to rare disease kids staying in Ukraine, as well as covering grants to families in need to spend on medical expenses and rehabilitations locally:

🕊️ https://www.birdsforsofia.org/donations/save-ukrainian-kids/