Survivor Stories

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Stories of survival from the perspective of the survivors battling a rare brain tumor.

Navigating the Shadows: My Journey with Craniopharyngioma and Finding Gratitude Along the Way

My story is a very bitter one. I started to have virtually all the symptoms ... Read more

Scaling New Heights: Conquering Mount Kilimanjaro with AVP-D and Thriving Beyond Rare Disease

Hiking Kilimanjaro has been a dream of mine for many years and on Sunday 25th ... Read more
Jack, a cranio warrior during treatment

Patient Story: Jack

Hello, my name is Jack! In 2015, I was diagnosed with a Craniopharyngioma in May ... Read more
Leigh, a cranio warror

Patient Story: Leigh

A story of tumor recurrence and a survivor’s persistence. My name is Leigh Blair. In ... Read more
Bob - a cranio warror

Patient Story: Bob

My name is Bob Brady, and I am from Ireland. In 1991, I was diagnosed ... Read more

Patient Story: Trinity

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

Patient Story: Leigha

Hello, I’m Leigha! I am a proud cranio warrior! I was diagnosed [with a craniopharyngioma] ... Read more

A Story of a True Warrior – Meet Evie McCollum

Evie is a craniopharyngioma survivor who also battles adipsic diabetes insipidus Evie McCollum is a ... Read more

Dear Parents: Here’s What I Want You to Know About Managing HO

Contributed by Lynne Mathies, craniopharyngioma survivor and RAWF intern “At the end of the day, ... Read more

Survivor Spotlight: Daniel Levy

Competitive sports have always been a major part of my life. I was at swim practice one morning in the summer of 2014, I was 14 years old. I had experienced episodes of extreme euphoria about twice a day for several months, I had later found out those episodes were aura seizures. But this particular morning the aura seizure was extremely intense. Last thing I remember is standing in the swim team locker room. I had fallen and hit my head on a concrete bench, as a result suffered an extremely severe concussion. after being rushed to the hospital I had a brain scan and it was discovered I had a brain tumor in my front right temporal lobe. 

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