My Condition

I was born with a very rare neurological condition called Familial Dysautonomia or FD. It means the nerve endings are not fully developed in my body, so I don’t feel hot or cold or pain. One time I lost my retainer and I had swallowed it! I couldn’t feel it. I also have no tears. 

Receiving the FD Award of the Year in 2006 in New York City.

Over time my balance has gotten worse, so I walk with a walker. We call it the “Biromobile” because Biro is one of my many nicknames.

Kids with this condition can have serious problems with pneumonia, so I use special machines to shake up my lungs and keep them clear. I also don’t drink any water by mouth, only through a little tube I put into a button to my stomach, and eat only pureed food, so it goes down the right way and I don’t aspirate.

I donated my painting “Eye”
as gratitude to my PROSE lens medical team

Over time, my eyesight has gotten worse because of the optic nerve, so they say I am now legally blind, but I can still see! And paint!!!

I love my life. I see my condition as an inconvenience but not a disability. I want other people to see me that way too and just focus on me as a person, and my art and my stories and how grateful I am to be alive! 

I believe there’s nothing I can’t do if I really want to, and all I have to do is talk to God and keep going! I feel angels all around me, always helping me and guiding me. I am blessed.