Ella D.
Pennsylvania
Birth Date - April 30 2012
Main Diagnosis - Congential bilateral Perisylvian syndrome and intestinal neuropathy brain gut dysfunction
THEME: 
Zodiac babies
Zodiac babiesElla's Story
Ella is 2 years old and has an extremely rare brain disorder called Congenital Bilateral Perisylvian Syndrome. Ella's brain never fully developed nor did the outer covering of her brain or the motor cortex. Since the motor cortex never fully developed Ella isn't able to swallow or eat by mouth and her brain is immature. Signals from the brain to certain body organs don't work. Her brain doesn't send the signal to her intestines so Ella has a form of intestinal failure called Intestinal Neuropathy/ brain gut dysfunction. She is unable to eat and is 100% TPN dependent (IV nutrition) which she receives through the central line in her chest. That line sits in the main vein of her heart and that's how she receives all her nutrition and fluids. There is a 75% chance that children with this brain disorder have some form of mental retardation as well as epilepsy, hearing loss and blindness in childhood. Ella is also hypoglycemic , she has an ASD (hole in her heart) that will be fixed soon. As well as Pulmonary Valve stenosis (Another Heart Defect) Ella also has airway disease. When she was 10 months old she had surgery called a Nissen where they wrapped the top of her stomach around the bottom of her esophagus and stitched it because she was aspirating from severe reflux. She has a G tube to constantly drain and vent her stomach and a separate J tube to hopefully be able to feed her one day. On March 30, 2014 Ella stopped breathing and needed CPR. She has been through so much but she proves how strong she is everyday. She is absolutely amazing and we cherish every moment we get to spend with her.
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