Imagine being locked in your own body. Imagine not being able to speak, walk on your own, see, or even swallow your own food; while having complete cognitive abilities and independent thought. Imagine waking up every morning and experiencing the sensation of losing the use of another finger, toe or limb at a pace that shuts down your entire body within weeks. You are trapped, without hope or without a lifeline to the world around you. Now imagine you are just 6 years old.

Brainstem glioma, otherwise known as DIPG, is a disease which affects the most innocent of all victims – children who just want to grow up and dream. And just at the time that they are planning their first day of kindergarten, it hits without warning and without mercy. In the beginning it appears to be a migraine, loss of balance or even slurred speech. Within hours or days, the effects become more noticeable as the child becomes paralyzed and unable to eat. Soon, the glioma will restrict vision, ability to talk and sometimes breathing. By the time treatment is sought, it may already be too late. Even those that discover it early are frequently left without options. This is because there is no cure.

Brainstem glioma is just as elusive as it is deadly. Even today with superior advances in cancer treatment, brain stem glioma prognosis is regarded openly by experts as "dismal" in medical articles and it is recommended that these young patients receive advanced and experimental treatments due to the severity of the disease.

What is DIPG?