Arav Singh, our Craniopharyngioma Warrior

Our son Arav was first diagnosed with a 13cm Craniopharyngioma in 2021; the largest doctors in South Africa have seen.  At this point, it had already destroyed three out of four Optic Chiasms, leaving him blind in his right eye and with 25% peripheral vision on the left.  

The write-up below speaks to his journey over the past five years and the numerous iterations of regrowth/regression we have seen with his tumor.  The tumor, cyst and procedures that he has endured have depleted his quality of life considerable.  This child that once enjoyed cricket and swimming is now hemiplegic. He has limited capacity to use his right hand and read; he attends a school for Prevocational Curriculum, however, his short/mid term memory has regressed completely. 

Please take some time to read through the notes below to gauge the depth of his diagnosis.  

Our child has multiple scars and entry points on his skull.  This tumor continues to plague our child, hence, we are at a point where we are willing to explore a complete cyst resection, Stem c...