Tiny Light Brooklyn loves to dance and play with dogs. She’s a whiz at using electronic tablets and really enjoys listening to music and watching Bubble Guppies.
At ten weeks of age, Brooklyn was diagnosed with a rare medical condition called PHACE syndrome. Every case of PHACE is different; Brooklyn’s case is characterized by a benign tumor wrapped around the back of her right eye, many malformed and/or missing arteries that lead from her heart to her brain and a central brain issue that causes dangerously high blood pressure. The malformed and/or missing arteries have caused Brooklyn to have several mini- strokes. The central brain issue that she suffers from doesn’t allow her to regulate her blood pressure and as a result, her blood pressure must be monitored daily. After numerous MRIs,
Brooklyn was also diagnosed with hydrocephalus (water on the brain), thinning of her corpus callosum (the grey matter that connects the two brain hemispheres) and two other anomalies that medical specialists are unable to explain.
Brooklyn’s parents say that the most difficult aspect of the journey is a feeling of helplessness and the inability to help Brooklyn. They say, “This battle is a pain that no parent should ever know.” Although there is not yet a cure for PHACE syndrome, Brooklyn’s family remains positive, saying, “Miracles happen every day — to us Brooklyn is not a child with PHACE, to us she is just our HERO.”
Story by Stephanie Bond
Images Captured by Melissa Avey Photography