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.”

Two-year-old Anastasia Rafter from Niagara Falls, NY, was diagnosed with an aggressive tumor in her optic chiasm on December 20th, 2016 at 8 months old. The tumor caused her to go completely blind. She failed all standard chemotherapy and underwent surgery in October 2017 where 50% of her tumor was removed but the surgery destroyed her pituitary gland.

On July 21st, I sat in the Emergency Room at Yale and had a doctor tell me my son had a large mass at the base of his brain. As a parent, nothing can prepare you for this news. My sweet Teddy underwent a ten hour surgery on July 23rd to remove a large amount of the tumor.

This summer, Raymond A. Wood Foundation provided Henry Cloninger, a 6-year-old from Godfrey, IL, a blood analyzer to help his family manage his medical care at home.

Silas Johnson, age 8, lives with his mom Chelsea, dad Casey and 1.5 year-old brother Ackley in Cody, Wyoming. Silas was diagnosed with a craniopharyngioma brain tumor in January of 2017 and, as a result, suffers from diabetes insipidus (DI) a condition where, due to injury, the pituitary gland does not excrete the anti-diuretic hormone (ADH0, thus making blood sodium levels difficult to manage.