Alejandro is 12 years old and is a liver transplant survivor. He was diagnosed with biliary atresia, a life-threatening condition in infants in which the bile ducts inside or outside the liver do not have normal openings resulting in the liver transplant. After the transplant, his mom started to notice some behavioral issues. Doctors tested Alejandro ammonia levels in his brain which were extremely elevated. High levels of ammonia can be very dangerous causing comas or even death. Alejandro’s ammonia levels are very inconsistent; as high as 85 where 15 is the normal level. Alejandro is taking medication to keep the levels down but it can take 6-9 months to bring the levels back to normal. Alejandro and his mother visit doctors at Lucile Packard Children Hospital two times per month to monitor his levels.
When Alejandro was in 4th grade, he was attending school but his behavior became disrupted in the classroom. He had difficulty concentrating, mood changes become more frequent and he was confused; common issues from a child with high levels of ammonia in the brain. Since it takes so long for the levels to dissipate, the school recommended that Alejandro be home schooled where a tutor comes to the house every day to help him with his studies. He has been home schooled ever since. He misses his friends dearly and is hoping to return soon. Alejandro’s mother is an Accounting Manager at a family owned IT small company. The company owners understand Alejandro’s medical situation but since she is an hourly employee, every time Alejandro has a doctor appointment, she needs to take time off work. This has caused a burden on their financial situation.