26 year old new mom Kristina fought hard to find out what was wrong with her chronically ill newborn son Lucas. He was finally diagnosed with Mast Cell Activation Disorder, a disease that rendered him allergic to practically everything – including water. Lucas was being sustained by his mother’s breast milk; Kristina was on an 8-month diet of basically only eating 1 food that Lucas could tolerate. She was exhausted, malnourished, and battling her own newly activated Mast Cell Activation Disorder coupled with Ehlers-Danlos Syndrome. Then the unimaginable happened after a 3-month hospital stay in California where she and her family were seeking treatment for her son Lucas. Kristina suffered a massive brain stem stroke which resulted in her having locked in syndrome, an extremely rare secondary disorder that renders her aware and alert but unable to move, talk, eat, hold or play with her son.

That was 20 months ago. Today, Kristina, a physical therapist herself, has been able to prove many doctors wrong. Despite a grim prognosis, she breathes on her own and is making some progress in her PT. While Kristina’s health demands 24/7 care, we are so thankful that Lucas’ diagnosis has stabilized due to aggressive medical intervention. For Kristina, communication is attained by spelling the alphabet with eye blinks, where she can turn letters into words and sentences. She has begun using eye gaze software that allows her to text words and audible phrases using her eyes, a screen, and a speaker. It is a tedious process, but allows Kristina to have a voice.