DIPG is especially brutal because it’s a tumor that forms in the brain stem, in an area called the pons. The pons is really the control center for subconscious life. It’s where the heartbeat, breathing, swallowing, eye movement, eyesight and balance are controlled.
So far it has been impossible to operate on. And because it is behind the blood barrier, a semipermeable membrane inside the brain, effective doses of chemotherapy, radiation or most anything else can’t get to it.
This awful form of cancer first gained recognition among American doctors in 1962, when astronaut Neil Armstrong’s daughter, Muffy, had those same stabbing headaches that Morgan has. Her eyes, just like Morgan’s, began to turn inward. She died just months after doctors discovered the tumor at the base of her brain.
Even though only 0.001% of American kids are diagnosed per year, brain cancer is the leading cause of death in children. Of the funds raised for cancer research, only 4% is allocated to DIPG.This underfunded illness causes parents to look for money elsewhere. The dozens of Facebook pages, GoFundMe, other crowd funding campaigns and family home pages are difficult to look at. All of them have side-by-side photos of smiling, happy kids in soccer uniforms, at swimming pools or at school, then the unrecognizable, bloated faces, crossed eyes and withered arms of kids in wheelchairs.These torturous transformations often happen in a matter of months. It’s unfair to children who have never had a chance to live, to parents who don’t know how to explain to their children what is happening and to siblings who don’t understand death and usually have not outlet for grieving.
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