Sep 27, 2017 Latest post:
Jan 21, 2018
Simon was born with Esophageal Atresia (esophagus not connected to stomach), Tracheal Esophageal Fistula (connection between trachea and esophagus), This is commonly referred to as EA/TEF, and Double Aortic Arch (non-symptomatic at this time). He was also born with a kidney condition and heart condition that resolved shortly after birth. Additionally, he suffers from severe abdominal migraines. Simon has had 6 major surgeries related to his condition. He had a feeding tube for most of his first 5 years of life. We were blessed with 2+ years of medical stability. He's now 8 years old and has been having issues for the past year. We consulted with a specialist and were advised Simon has several issues that need to be addressed. At this time we don't know ALL the options available; however, we know the worst case scenario will be an esophagus replacement. He will be admitted to Children's Hospital Los Angeles (CHLA) on September 26, 2017 for a couple of days of testing and procedures that will give the doctors a better understanding of what his anatomy looks like internally and how it's functioning. We will be using this forum to keep you updated. Please keep him in prayer as he walks through this medical journey.