Dancing with the Rogue Valley Stars, 2024!

Liberty High School
Joubert Syndrome
Club's City, State:
Hillsboro, OR
Service Hours:
Date Adopted:

Meet Adeline

Read Adeline's Story

Adeline is a sassy four-year-old with a big personality. She enjoys “Bluey” the TV show, books, JoJo Siwa hair accessories, arts and crafts, and spending time with her dogs. However, more than anything, she loves Olaf the snowman!

Before Adeline was born, an ultrasound revealed that her heart was too big, her stomach was too small, and part of her brain was missing. Initially, there were several diagnoses about what was wrong, but none were correct.

When Adeline was born, she was life-flighted to a larger hospital. At two months old an MRI revealed she had Joubert Syndrome, a rare genetic syndrome causing her brain to not fully form.

Adeline spent the first 110 days in the hospital due to cysts in her kidneys, seizures, and blood pressure issues.

There are many challenges that come with Joubert Syndrome. Adeline has difficulty with both gross and fine motor skills, experiences epileptic seizures, and high blood pressure, and receives her food through a G-Tube.

In addition to all of this, she is non-verbal but is learning to use an eye-gaze system to communicate. Adeline also uses a wheelchair and a C-Pap mask in the evenings to help her breathe.

Despite this, Adeline is “spicey” and full of life. She works hard through multiple kinds of physical, occupational, and speech therapy to grow stronger and gain new skills.

Adeline will be adopted as a Sparrow to Liberty High School. Students will work hard to raise money for Adeline through sponsored community service.