Kristen was born with a rare disease known as "Ondine's Curse." CCHS is the neurological absence of the appropriate trigger mechanisms to provide adequate breathing. In other words, she would "forget to breathe." She sleeps inside a port-a-lung tank with a ventilator and needs also needs ventilator support sometimes during the day.

When other symptoms appeared, such as hearing loss, intermittent paralysis, inability to move her eyes or speak, loss of muscle tone, exercise intolerance, and urological issues, she was also diagnosed with Mitrochondrial Disease. The Mitochondria is the part of the cell that produces energy. It the mitrochondria are defective, the brain becomes impaired, muscles twitch spastically and weaken, the heart doesn't pump correctly, vision is impaired, etc.

Kristen needs someone with her at all times to make sure she keeps breathing, so she has a trained service dog named Brooklyn. This well trained bundle of fur barks to summon help when Kristen can't communicate and stimulates Kristen to breathe when her breathing becomes shallow. Brooklyn retrieves the phone to call paramedics when the ventilator monitor alarms sound. She can also summon elevators, turn lights on and off, open and close doors, and even pull Kristen's wheelchair!

Kristen is a typical teenager. When she's not working on home school assignments, she hangs out with friends, watches TV, or reads. She loves to travel, scrap book, and write to pen pals.

For email and snail mail addresses, personal web site URL, medical fund information, and a current list of interests and hobbies, visit our "Kids List" page.

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