Name:
Eziquio
Club:
Hedrick Middle School
Condition:
Labrune Syndrome
Club's City, State:
Medford, OR
Service Hours:
Date Adopted:
12/16/2024
Website:

Meet Eziquio

Read Eziquio's Story

Eziquio is a very social and happy 4-year-old little boy. He loves Spider-Man, amusement parks, and being outdoors. He loves to make people smile and laugh. Eziquio is described by his family as having such a beautiful balance of tenderness and compassion for others, while also being the rough-tough kid who loves monster trucks and adventure.

Eziquio was born 6 weeks premature and spent 3 weeks in the NICU under special care and requiring a feeding tube.

When Eziquio was about a year and a half, he experienced his first seizure. He was taken by ambulance to the Medford hospital. From there, he was emergency airlifted to Portland. Doctors stabilized him and determined he would need to be on seizure medication.

In April of 2022, Eziquio was diagnosed with an extremely rare genetic disorder called Labrune syndrome. This syndrome is caused by mutations in the SNORD118 gene and affects the functions and growth of the brain.

This condition caused Eziquio to develop a cyst on the right side of his brain. Doctors surgically removed the cyst and installed an Ommaya reservoir (port) to help aid in draining fluids from his brain.

In June of 2024, doctors discovered more cysts. Due to the large number, doctors decided to experiment with chemo infusions to see if they could get the cysts to shrink.

Eziquio has already had 5 surgeries, IV chemotherapy every 2 weeks, many MRIs, and goes in every 4-6 weeks to have his port drained.

This has been a scary journey for Eziquio and his family. However, they are determined to live each day to the fullest and despite all the medical hurdles, Eziquio continues to bring so much light into this world. He proves every day that these medical challenges do not define him.

Eziquio will be adopted as the Sparrow to Hedrick Middle School. Hedrick students will work hard to earn money for Eziquio through sponsored community service.