my son Ronald Jesse Abel Ganta diagonised with Hyper IGM syndrome when8 months old. A rare one in a million rare life threatening genetic disorder. At 8 months old his body turned blue.now 14 years and a till battling.
Each dose IVig is effective for 3-4 weeks.high costs incurred has left the famil dry of all resources.Has frequent bouts of wheezing, nausea, headaches. In 2016, had a brief encounter with death. And was put on ventilator for 25 days.Dad suffers from SSHL AND MOM JUST A TEACHER IN A SMALL SCHOOL.
RONALD IS A. HOLD PRODIGY. WRITES STORIES. PLAYS HARMONICA AND KEYBOARD SIMULTANEOUSLY.PAINTS AS WELL
HE HAS WON national school computer science competitions and plaved First each time he participated
IM AP state level Science Talent Search Exam he stood first. .He never attended a Computer Class in school becoz he was most of the time hospitalized. But scored highest marks in his class
BONE marrow transplant is the only solution To his medical condition
doctors said that A1-005/006,/10 fully leukocyte antigen donor was the only ray of hope.
A DONOR WAS IDENTIFIED. BUT HE DROPPED OUT DESPITE COUMSELLING.
HIS MEDICAL COSTS NOW ARE 30 lakh rupees