Svyatoslav with SLC6A8

Meet Svyatoslav, a brave little boy living with a rare genetic disorder called SLC6A8 — a creatine transport deficiency.

Svyatoslav is nonverbal and faces enormous challenges every day: generalized epilepsy, autism, ADHD, complex metabolic disorders, fine and gross motor difficulties, severe behavioral issues, strabismus, and flat-valgus feet.

There is currently no cure for SLC6A8, as with 95% of rare diseases. Because of this, Svyatoslav relies on continuous anti-seizure medication, regular monitoring of his metabolic and neurological health, and intensive rehabilitation.

Thanks to the support of Birds for Sofia, he has been able to undergo comprehensive physical therapy and sensory integration sessions, as well as receive essential medication to help control his seizures.

We are endlessly grateful to everyone who makes progress for children like Svyatoslav possible — our community, partners, and volunteers who contribute their time, expertise, and financial support to bring hope to places too often overlooked.

Learn more about our mission in helping kids with rare diseases and consider supporting us.