Friday, May 13, 2011
This is Kylie Earle. She is 5 years old.
Kylie was diagnosed with neurofibromatosis (NF) type 1 when she was four months old. NF is a genetic disorder that causes tumors to grow anywhere in or on the body. In her five years, she has undergone 5 surgeries on her left eye, with the final surgery resulting in removal of her eye from glaucoma and a plexiform neurofibroma (tumor). She also is missing a major portion of the bone that separates the eye from the brain. She has been under anesthesia countless times.
At one point in her life she was in the hospital every two months.
Kylie has been “kissed by angels”, as she calls it, all over her body.
NF also causes brown pigments to form, which are called café a lait. These spots are still forming on her skin. This past November, she underwent a major surgery to remove as much of her plexiform neurofibroma as possible. This tumor extends from her eye all the way back to the middle of her head. After recovering from surgery, she will possibly undergo a clinical trial chemotherapy for a year to stop the growth of the tumor.
Despite all of the doctor’s appointments and surgeries, Kylie is a spunky five year old who enjoys playing with her sister, Katelyn, and going to school. Her future is unknown, we do not know when, where, or if the next tumor will form. We can only pray for a cure.
NF1 affects 1 in 3000 births. This makes NF more prevalent than Cystic Fibrosis, hereditary Muscular Dystrophy, Huntington's Disease and Tay Sachs combined.
Kylie needs a cure.
Come out tomorrow, May 14, to Vitty's Sports Bar in Lewisville and enjoy some good music and good food... all to help find a cure for Kylie!!
Join Mo Robson, Rachel Stacy, and Rob Donnelly for an acoustic song swap from 2-7 at Vitty's in Lewisville on 407. Proceeds from the event will benefit Kylie Earle and CTF.
Silent Auction until 5p.m. Please let us know if you have any items/services you would like to donate for the Auction.
$10 Contribution at the door includes BBQ buffet!!
Beer and Shot specials all afternoon!!
Meet Kylie on the patio from 2-3.
I'll be there! How about you?