Junior suffers from hydrocephalus, often called "water on the brain," which ioccurs when cerebrospinal fluid (CSF) builds in the brain due to a blockage. Left untreated, in addition to pain and suffering, infant hydrocephalus leads to significant brain damage, severe developmental delay, blindness, and ultimately death. In the developed world hydrocephalus is immediately treated with a surgical procedure to install a shunt with little long term neurological impact. But in the developing world, where 80% of hydocephalus cases occur, there is limited or no access to surgical care.
For Junior, his hydrocephalus went untreated and caused severe swelling of his brain. As an infant his skull was malable and expanded with the swelling. He now and forever will suffer from an oversized head, convulsions and brain damage.
Junior's luck in infancy did not improve. Shortly after his birth his father was killed in an all too common motorcycle accidents and his mother was not able to care for his unique needs. Junior was brought to Home of Hope, an orphanage for children with severe disabilities, one of only a handful in the country.
Finally, at Home of Hope, his luck did start to change. In the loving arms of the founder Edith and the other "mothers" on staff, Junior has started to thrive. He has developed speech and using his wheel chair easily moves about on his own accord.
Now that he is about 5 he is eager to start school and this will present a new challenge and Junior will have to struggle again. Junior lives in a rural area where he will attend a school where none of his teachers even know what hydrocephalus is or how to address Juniors unique needs. He will face social descrimination from his peers.
This will be a difficult and painful time for the ever friendly and social Junior and we cannot prevent that. But we can start to change this, now. Alongside Home of Hope embraceKulture is working to ensure Junior's teachers receive training to help build a more inclusive classroom, which will not only give Junior the opportunity to learn and thrive but also foster acceptance and eventually friendships.
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