Daniel'sFight w/ STAT GOF 3

If you can please share Daniel's Story. I am trying to find others in the country and outside the US. I know of only 3 with this disease. One in Texas and one in the UK. The link to the journal is in comments. Any help would be so appreciated. Monetary and/or a share. Thank you so much.
Here is the link to Daniel's Story written by his doctor at NIH in the Pediatric American Medical Journa;l
http://journal.frontiersin.org/article/10.3389/fped.2017.00049/full