Brooklynn J.

Condition: Rare genetic disorder - CDK-L5
City, State: Bend, OR
Club: High Desert Middle School Sparrow Club Service Hours:
Date Adopted: 12/03/2021

Brooklynn's Story:

Brooklynn is a 3-year-old girl who has gone through so much since she was born. At 4 months old she began having seizures. She was transferred to OHSU in Portland for genetic testing.

Doctors found a mutated gene in Brooklynn’s brain. She has a rare genetic disorder called CDK-L5. It impacts her development and growth… and causes epilepsy.

At 9 months old Brooklynn was put on steroids to stop her seizures. This caused extreme weight gain.

At a year and a half Brooklynn suddenly stopped eating altogether. Her weight began to drop at such an extreme rate that doctors decided to put her on a G-tube for all her nutrition. She continues to eat thru the G-tube as well as take all her medications that way.

Currently, Brooklynn experiences 4 different types of seizures daily. She goes to physical therapy once a week to work on her reflexes.

Brooklynn can’t talk or walk. She wears special orthotics on her feet to help keep them straight. She can sit on her own but can’t stop herself from falling over. She is working on her balance and crawling.

Brooklynn is very expressive. She cries a lot right now, but her parents are very good at identifying what she wants or needs.

Watching the Disney Moana movie makes Brooklynn very happy. She also loves going for walks by the river with her family. She really enjoys water, baths, and pools.

Brooklynn will be adopted as a Sparrow to High Desert Middle School. HDMS students will work hard to raise money for Brooklynn through sponsored community service.

sponsor(s):

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