Vayda was a typical, healthy baby until she developed a fever at four months old, which left her completely weak from head to toe. After a hospital visit and a diagnosis of a UTI, she quickly recovered. However, on May 31, 2023, another fever struck, causing her to lose all abilities again, including head control, use of her limbs, swallowing, and speech.

Local doctors were baffled, and Vayda was transferred out of state for advanced care. On June 29, 2023, genetic tests revealed she has an ultra-rare neurological condition called Fever Induced Paroxysmal Weakness Encephalopathy (FIPWE). This condition, which affects just four people in the US and 30 worldwide, causes paralysis triggered by fevers or increased temperatures, with no predictable timeline for recovery.

Vayda’s parents were sent home with little guidance and had to educate themselves, connecting with specialists nationwide and the few other families facing the same condition. Despite the brutal challenges, they find beauty in Vayda’s daily fight to rebuild her strength and basic functions.

With the right therapies focusing on neuroplasticity and reflex reintegration, Vayda has the potential to regain abilities such as sitting up unassisted, crawling, standing, and walking. This award will enable Vayda to attend an intensive therapy camp called Dynamic Movement Intervention in Lake Tahoe this August.

We are incredibly grateful for our community and this foundation, which offer Vayda the chance to thrive. Thank you for your support in helping children like Vayda on their journey to recovery.