Condition: Lowe Syndrome
City, State: Bend, OR
Club: Mountain View High School Sparrow Club Service Hours:
Date Adopted: 10/01/2021
Sebastian's Story:Sebastian is a sweet one-year old who loves being close to his mom. He loves being held in the ergo baby carrier and for mom to just keep moving!
Sebastian was born early with low muscle tone and his corneas were completely clouded over at birth.
Sebastian had his first eye surgery at 3 ½ weeks old and then cataract surgery at 4 ½ weeks old.
Sebastian started having seizures at 5 months old. He was life-flighted to Doernbecher Children’s Hospital where there were many complications, and he almost didn’t make it.
Genetic testing was done, and Sebastian was diagnosed with Lowe Syndrome.
Lowe Syndrome is characterized by vision problems, kidney problems that usually develop in the first year of life, and brain abnormalities that are associated with intellectual disabilities.
Sebastian is nonverbal and 100% G-tube fed. His mom has learned to read his facial expressions.
Despite all the medical challenges, Sebastian is a fighter! His face lights up when mom reads to him, and he loves when she sings “Somewhere Over the Rainbow”.
Sebastian will be adopted as a Sparrow to Mountain View High School. MVHS students will work hard to raise money for Sebastian through sponsored community service.
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