I am destroyed. My precious angel is dying.

[NNadir]

254. There are 27 clinical trials underway for this disease. I just collected a number of scientific...

...papers on this disease, and it does seem that it is becoming better understood.

Please go to ClinicalTrials.gov and enter the disease. Not all clinical trials work, but some do. You need to see if your god-daughter's daughter qualifies for one of these treatments.

It seems to involve a somatic mutation in certain kinds of cells.

There a large number of scientific publications on this disease, and I'm in the process of downloading some if I can be of some help.

I am not a professional cancer researcher or a physician, but I do have excellent command, as a scientist, of the scientific literature and might serve to direct you and your family to where current research is underway. PM me if you are interested in my help.

For example: The genomic landscape of diffuse intrinsic pontine glioma and pediatric non-brainstem high-grade glioma

Then this this, which is open sources at PLOS: Pre-Clinical Study of Panobinostat in Xenograft and Genetically Engineered Murine Diffuse Intrinsic Pontine Glioma Models Generally a publication involving a preclinical trial - this one was in mice - lags several years after the actual event, and thus the drug may be in clinical trials.

I lost my mother to a brain tumor, and while I will not claim that I know how you feel - I suspect I don't, since no one really knew how I felt when I went through it - I am willing to do what I can to help steer you.

It may not be time to give up and accept this. There may be help.

PM me if you are interested in my help.