Bailey R.

Condition: Mitochondrial Disease
City, State: WA
Club: St Monica School Sparrow Club Service Hours: 2880
Date Adopted: 8/22/2011

Bailey's Story:
Bailey was born in Kirkland WA on Feb 8 2005. She has grown up in Lake Stevens, WA with her brother Will, her mom Chelsea, and her dad, Dave. Bailey goes to Mt. Pilchuk Elementary; she is going into first grade. Bailey enjoys animals, swimming, music and movies. She loves to play outside in the woods with her dogs Possum and Roxy, and to ride her pony Moonshine. This year Bailey will be learning how to swim, and learning how to ride her pony in some pee-wee barrel races. Bailey has Mitochondrial disease. This is a genetic disease that runs in her mother's family. Her mother's brother and sister died from it in the late 60's early 70's. The mitochondria in our cells is what creates energy to sustain life. Her mitochondria is dying off. Because of this, she has heart disease, epilepsy and muscle neropathy and hypotonia. This is a progressive disease with no cure. She is on a waiting list for a non FDA approved drug that is at Stanford, and Childrens Hospital is having budget issues trying to get it. 8 out of 10 kids that are 90 days end of life on the study are making big turn arounds. Her family prays that they get this drug soon. Since April, Bailey has been in the hospital 5 times with huge seizures, and last month had what they called a metabolic assault which is similar to a stroke. Two parts of her Thalamus deteriorated and sloughed of into her spinal fluid. She is doing very well now, is strong and always makes huge come backs.