Can you imagine being completely aware mentally, but not able to speak, write, move or eat? And your two-year old son has serious medical issues? That is the current plight of Kristina Brightbill of Sarasota, Florida.
Kristina is a 27 year-old mother who recently suffered from a massive brain stem stroke. She currently can only functionally control movement of her eyes. Her condition is often called ‘locked-in syndrome’, which means that she is 100% cognitively healthy, but renders her unable to eat, talk and move. This devastating condition is requiring the use of a motorized wheelchair that her mom and husband (her primary caregivers) can use, as well as a wheelchair accessible van.
Prior to the stroke, Kristina was diagnosed with several conditions including: Mast Cell Activation Disorder (MCAD) – a cellular allergic disorder, Postural Orthostatic Tachycardia Syndrome, and a connective tissue disorder (EDS). In MCAD, mast cells (responsible for controlling allergic responses) are over reactive. Because mast cells are found all throughout the body, inappropriate activation can cause symptoms in the skin, gastrointestinal tract, neurological system, cardiovascular system, or elsewhere within the body.
Lucas, her two-year old son, also has Mast Cell Disease and Ehlers-Danlos syndrome (EDS). Since birth, he has had severe skin and GI symptoms.
At the time of her stoke, Kristina was on a six-month long limited diet of one to two foods and one brand of water so that her son could live with the Mast Cell Activation Disorder. In Lucas’ case, he suffers from severe anaphylactic reactions, and can be triggered by all foods, formulas and environmental triggers. Lucas could only tolerate breast milk produced by Kristina on this limited diet. Lucas had some of the best doctors in the world overseeing his medical care. These same physicians had also been supervising Kristina’s care. This medical team had been trailing food and nutrition in the hospital to attempt to gain long-term nutrition for Lucas. It was at this point in this long process that Kristina had her stroke.
Kristina and Lucas’ care will be life-long and there will be numerous expenses for things that we can’t anticipate. Insurance will not cover the cost of a wheelchair accessible van, which is absolutely necessary to transport Lucas and Kristina to doctor appointments.