Alexas World

About Me
My name is Alexa and I am 7 years old. I currently live in Fishers, IN with my mommy, daddy, and little brother. I suffer from Proteus Syndrome. Proteus syndrome is a very rare condition and affects 1 in a million people. There are less than 200 documented cases worldwide. Proteus syndrome is a condition which involves atypical growth of the bones, skin, head, and a variety of other symptoms. Proteus got its name from the Greek God Proteus "the polymorphous" because he was always changing his form. This syndrome became known when Joseph Merrick (the patient depicted in the play and movie titled "The Elephant Man") had a severe case of Proteus syndrome and not fibromatosis as was first suggested. Because I suffer from this syndrome I travel out of state to the National Institute of Health in Bethesda, Maryland. At this time I am non-verbal and in a wheelchair. I have several external tumors and lots of bony overgrowth in my frontal bone of my skull and in my jaw bones. My jaw bones are growing so much that I am unable to open my mouth wide enough to take in food therefore; I am on a feeding tube. Despite all of my challenges I am a very fun loving girl. This website my daddy created for me will keep you up to date on all of my accomplishments and progress I am making from hippotherapy, physical therapy, and much more. You will see I love to laugh and make others around me do the same. I also hope you will leave me a comment of encouragement on my Blog. Thanks, for taking the time to care.

Where Miracles Come To Life