Condition: CDG - Congenital Disorder of Glycosylation Type 1-A
City, State: Tigard, OR
Club: Century High School Sparrow Club Service Hours: 1150
Date Adopted: 11/21/2014
Sweet 2-year-old Keira was born with a metabolic disorder called CDG (congenital disorder of glycosylation) Type 1-A. This rare disorder, found in approximately 1000 kids worldwide, affects little Keira’s entire body, especially her brain.
Keira is deaf, has poor vision, liver function, blood pressure and muscle tone, and is significantly developmentally delayed. Since birth, Keira has been hospitalized several times and has endured several surgeries, including surgery to relieve fluid build up around her heart and surgery to have a G-tube installed for feedings. She has also had a cochlear implant installed enabling her to hear sound and hopes to have a second implant installed soon.
Although Keira cannot walk, she can operate a wheelchair, which helps give her some freedom to explore. Therapy is a way of life for Keira, as she receives physical, occupational, and speech therapy every week and works with 12 different specialists.
Keira’s disorder does make life challenging, but her parents, Jeremy and Aleandra, do not let this condition keep them from experiencing the joys of life with their sweet little girl.
Keira will be adopted as a Sparrow to Century High School in Hillsboro, OR. Students will work hard to raise money for Keira through sponsored community service and fundraising projects.