Connor, now 17 years old, was born with a rare type of brain tumor called hypothalamic hamartoma (HH) . Connor experienced gelastic seizures (a symptom of HH) from birth. Gelastic seizures are rare and involve episodes of nervous laughter with no apparent trigger. The seizures were never diagnosed until he began having complex partial seizures.

Lillian Knowlton, from Chesapeake, Virginia, was diagnosed earlier this year with a craniopharyngioma brain tumor. We met Lillian’s parents at the Pituitary Brain Tumor Day at Children’s Hospital of Philadelphia this past March while she was inpatient and post-op from a tumor resection. Recently, Jennifer, Lillian’s mother, reach out to us because of the struggle of getting her sodium under control. She said Lillian was basically confined to the house because of the constant monitoring.

Isaac, age 7, from Eugene, OR, was diagnosed with a craniopharyngioma brain tumor just this past December. The after effects of tumor treatment included difficult-to-manage diabetes insipidus with fluctuating sodium levels and an unreliable thirst mechanism due to hypothalamic damage.

In the fall of 2013, he was 8 years old and had just finished his first season of tackle football; he loved sports of all kinds, loved building with Legos, loved history and science. He was what you might refer to as an “old soul.”