Benjamin at 5 months of age.
Happiest. Guy. Ever.
Benjamin was diagnosed at 5 months old with a rare brain malformation called polymicrogyria. Polymicrogyria is a developmental malformation of the human brain characterized by an excessive number of small convolutions (gyri) on the surface of the brain. Either the whole surface (generalized) or parts of the surface (focal) can be affected. In Ben's case, both sides of his brain have been affected in the frontal and parietal lobes. The folds (gyri) of that area of his brain are atypical for Ben. The gyri are too many (poly) and much smaller (micro) than normal.
Polymicrogyria has had several neurological implications for Ben. He has very low muscle tone and therefore has challenges sitting up, rolling over, and making his body move in a functional manner. His trunk has low muscle tone, whereas his limbs have higher than normal muscle tone. We need to teach Ben how to do simple tasks like how to move his hand properly to grasp something and how to keep his head in line with his body. Tasks and play that come naturally to typical children - like putting toys in their mouth - need to be taught to Ben.
Polymicrogyria manifests itself differently in each child that it affects, depending on what parts of the brain are affected. The potential for severe cognitive impairment is real, but we have discovered that Benjamin is a delightfully social baby who responds in wonderful way to the people around him, mostly his big brother. He is playful, happy and will brings us infinite joy with his smile and laughter.
Ben was also born with cataracts in both of his eyes. This, too, is a rare condition, affecting only 3 in every 10,000 babies. Ben had the cataract in his left eye removed at one week old. He wears a special contact lens in that eye in order to have vision. His right eye still has a cataract because it is not impeding his vision. Ben uses his vision quite functionally, in fact, and we are proud and pleased with how far he has come in his quest to have efficient sight.
As Benjamin's parents and #1 advocates, we are always open to questions about Benjamin and his challenges, so please do not be afraid to ask. We love talking about him! We have also done, and continue to do, independent research into motor development delays, their causes, and intervention techniques that have proven successful. We are amateur neurologists and physical, speech, developmental, occupational, and vision therapists.
Thank you all for your interest in our sweet boy. He has taught us more about how precious and sacred life is than either of us understood. It's hard to explain this sense of strength that this small child seems to possess. Although Ben seems oddly aware of his limitations, we are not surprised daily to see such determination in him. With his will and strength, and with God's grace, we believe that Ben will enjoy life beyond his challenges and will reach his fullest potential.