Welcome to my page about my journey to fight against kernicterus, irreversible damage from newborn jaundice. Please join in!
|Lexi has a neurological condition called kernicterus as a result of very high bilirubin (jaundice) in the days and weeks after her birth in 2002. Like most children with kernicterus, Lexi is extremely intelligent but has a severe movement disorder that has left her unable to walk or talk.|
In 2009, in an attempt to help manage her severe movement disorder, Lexi became the first person ever with kernicterus to have a procedure called Deep Brain Stimulation (DBS). That first procedure helped reduce Lexi’s abnormal muscle tone, but didn’t give her the one thing she wanted most—a voice. In 2016, Lexi underwent a second DBS procedure to a new area of her brain. Programming and therapy for this new DBS is ongoing, but Lexi is making incremental improvements in her ability to communicate. She hopes that one day she will have enough control of her voice or an aug com device to go to college.