Sara J.

City, State: Bend, OR
Club: Redmond Proficiency Academy Middle and High Schools Sparrow Club Service Hours: 2609
Date Adopted: 2/01/2019

Sara's Story:
Sara is a bit of a medical mystery. When she was born, she developed just like any other baby girl, but at about 6 months old she suddenly stopped eating. She also could not sit up on her own and had very weak muscles.

Her family began a whole new journey, including several trips to Doernbecher Hospital in Portland. Sara had developmental delays, epilepsy and her first diagnosis was cerebral palsy… possibly due to a RELN gene. The RELN gene provides instructions for making a protein called reelin. This protein is produced in the brain both before and after birth. After birth, reelin likely plays a role in many brain processes.

Her parents did everything they could to get Sara to eat. At age 2 she was only 16 pounds and she had surgery to place a G-tube, so she could get enough nutrition. That is still the way that she gets most of her nutrition. She can eat foods on her own, but she just can’t eat enough to get all the nutrition she needs.

Sara began walking at 3 years old and has basically been non-verbal her whole life. Sara will be 11 years old in March and can walk and even run now! She doesn’t let too much slow her down and wants so much to be independent.

Sara had genetic testing done to try and figure out exactly what is causing her seizures and how they can be treated. Recently Sara’s seizures have increased dramatically. She has from 50 to 90 a day! She needs to see more specialists. Her parents are hoping for anything that can help strengthen her brain and body and help her to talk… so everyone can know her vivacious personality!

Despite her developmental and physical challenges, Sara is a very happy and high-spirited girl. She loves swimming or anything to do with water. She also loves car rides to Dutch Bros with her sister. Cadence, the family dog makes her happy. Her favorite animals are butterflies, dinosaurs, elephants and monkeys. She really enjoys technology and watching funny and educational YouTube videos on her iPad or her mom’s phone. Sara is a smart girl and loves learning. She has a great sense of humor too.

Sparrow Cash raised for Sara will help with ongoing medical expenses, special equipment and everyday living expenses. Students at RPA Middle & High School will “earn” Sparrow Cash by completing a minimum of 256 hours of sponsored community service.


Samuel A DeLeone Foundation
Samuel A DeLeone Foundation Samuel A DeLeone Foundation

Friends of Sparrow
Friends of Sparrow Friends of Sparrow