Celebrating Batya

A GLUT1 Journey of Resilience, Joy, and New Beginnings

On June 26th, 21-year-old Batya Pavlov stepped into a new chapter of life, marrying her husband, Aharon Notea, surrounded by family, love, and a story shaped by perseverance and hope.

Batya, who lives in Beitar Illit, Israel, was diagnosed with Glucose Transporter Type 1 Deficiency Syndrome (GLUT1 Deficiency) just before her fifth birthday, after experiencing seizures—mostly absence, but also some grand mal. Her treatment journey included the Modified Atkins Diet (MAD), MCT oil, and a variety of medications from early childhood.

At 19, Batya made a difficult and courageous decision: she wanted to stop taking medication so she could feel more like her peers. It wasn’t an easy path. Her parents were understandably concerned, and there were many emotional conversations. Eventually, they agreed she could try stopping her treatments while on vacation, under close observation. To their surprise and relief, there were no seizures. A year later, an EEG confirmed that the seizures were gone.

Earlier this year, with guidance from her dietician, Batya transitioned back to a balanced, carb-inclusive diet. She has remained healthy and seizure-free—no interventions, just living life fully and joyfully.

Batya is a multi-talented and creative young woman. She plays piano, guitar, and ukulele, dances ballet, sews, paints, sings, writes songs, and enjoys reading historical novels. She understands that during any future pregnancies, she may need to return to MAD—but for now, she is thriving as a newlywed and embracing this new season of life.

Her family holds fast to a favorite quote that reflects their journey:
“Life is not about how fast you run or how high you climb – it’s about how well you bounce.”

Her mother, Aliza, shares that Batya was a beautiful bride and that the atmosphere brimmed with pure, palpable joy from family and friends.

They continue to hope for future breakthroughs, especially gene therapy, to help children with GLUT1 Deficiency. Batya’s younger brother, Bentzi, also has GLUT1 Deficiency and still experiences absence seizures, but the family remains optimistic that with time and development, he too will find stability. They are all involved in helping coordinate connections, raise awareness, and provide support for GLUT1 families across Israel.

💛 Congratulations, Batya and Aharon! Your GLUT1 community is celebrating with you and cheering you on every step of the way.