Our little baby boy was born a month prem with a few obstacles in his way. He went in distress in the womb, swallowed meconium and was said to have had shortage of oxygen to the brain at some point. He was also diagnosed with a rare metabolic disorder called 3MCC. These obstacles have cause Johantjie to not be able to move as supposed to as the damage in the brain is where all movements are regulated. This means that anything to do with nerve system is not functioning the way it should. His movements are slowly progressing but he still can’t swallow and have secretions/spit/phlegm that needs constant suctioning.
We have the opportunity to meet with American specialist who are trained to help parents learn how to help develop children who have had brain injuries. These specialists come to SA once a year and have a hefty fee to enable all the specialist needed to journey to SA and share their knowledge with parents. The fee includes a 3 day course with 1 parent to explain and teach to help develop the brain and a 2 day assessment where the specialists will evaluate Johantjie and put a schedule together tailored to Johantjie’s needs.