Hannah

Holding my seizing baby in my arms was an experience I never could have imagined. Over the next several months, Hannah was put through many neurological exams, including whole exome genetic testing, and all results kept coming back normal. Regardless of these results, we just knew something was a bit off. From 4 months to 9 months old, she had a handful of abnormal eye head movements, that were never confidently identified by any physician.

Hannah is the youngest of our four children, and lacked the physical strength and overall energy compared to her older three siblings. At 13 months old, we took her in for a routine EEG, and it showed that she was having absence seizures. Days later, she had a lumbar puncture that came back with low glucose in her spinal fluid, putting her in the diagnosis category of having Glut1 Deficiency Syndrome). Next morning, Hannah was admitted to NewYork-Presbyterian Morgan Stanley Children's Hospital and initiated onto the ketogenic diet.

Receiving this diagnosis was incredibly shocking, foreign, and emotionally painful. However, with this disorder, food is the medicine and having an early diagnosis is so crucial for outcome and development. The impact of this diagnosis is impossible to predict for Hannah's future, but we are dedicated every single day to her care in hopes she will thrive.

UPDATE: Hannah has just turned three years old and is thriving in all areas. She attends a regular preschool five days a week, and receives PT, OT, Speech, and has a SEIT. The diet is a daily struggle, but as much as we feel hostage to medical keto, she is receiving what she needs to continue on as a typical, robust, and joyous little girl.