Caregiver Stories

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Caregivers share their experiences of watching their loved ones battle a brain tumor.


Patient Story: Trinity

Trinity was born on October 23, 2008, a beautiful, healthy 8lb 6oz baby girl. It ... Read more
Johan - a cranio warrior

Patient Story: Jonah

Story told by Rich, Jonah’s dad Our 5-year-old boy, Jonah has a crainiopharyngioma. He had ... Read more

Ten Year “Cranioversary” Parent Reflection

On August 23, 2011, Alex, our then-8-year-old son was diagnosed with a brain tumor called craniopharyngioma. We were told that although he would likely survive the surgery, he would be left with chronic medical conditions in its aftermath including “diabetes insipidus, panhypopituitarism, hypothalamic obesity...” I couldn’t absorb any explanations about medical terminology because my head was reeling from the shock of being told that my little boy had a brain tumor.

Will You Help Us?

My husband and I started this foundation in 2017 with a simple idea to provide handheld blood analyzers to brain tumor survivors like our son Alex. We had struggled so long to effectively manage his diabetes insipidus and the analyzer changed our lives. We knew others needed to have access to this device so we set out to remove the barriers to getting them. We quickly realized that there were so many other issues that needed to be tackled both for Alex and other survivors — issues likely faced by you or your child or loved one.