Home Page

Welcome to my page about my journey  to fight against kernicterus, irreversible damage from newborn jaundice. Please join in!

Lexi gus2Lexi & GUS

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.

 




7 thoughts on “Home Page”

  1. Hi Lexi love following all your adventures , and family life.
    Not forgetting Gus .
    Looking forwards to following your beautiful smile on this new page.
    Best wishes miss Lexi & family Lorna in London England xx

  2. Wow! What an amzing time you and your family had in London/Paris! Thank you for sharing! I can’t wait to see what your next adventure will be!

  3. Hi Lexi and mom,
    Wonder how you are and think of you often. I remember when we met some years ago at Magic Kingdom watching the parade. I see you on FB and it looks like you are making great strides. Hope you are well. Take care of each other.
    Renee and Dave

  4. Hi Lexi!!
    Love that you’ve started up a new website! It looks great so far!! Please give Gus a hug for me! I can’t wait to see you, Gus and your family again! Hopefully soon.
    Lynn
    Liberty, Lynyrd, Kool, Oscar, Cob, Solo and Storm

Leave a Reply