Dancing with the Rogue Valley Stars, 2024!

Sisters Middle School
Genetic Disorder Trisomy 9p
Club's City, State:
Sisters, OR
Service Hours:
Date Adopted:

Meet Charlie

Read Charlie's Story

Charlie is four and a half years old but is the size of a two-year-old. His mom’s pregnancy was normal but after he was born, he had problems feeding, digestive problems, and he wasn’t reaching his growth milestones.

His speech was delayed, and his balance was off while learning to walk.

When Charlie was a year and a half old, a specialist discovered that Charlie had a heart murmur. The left side of his heart was enlarged.

In 2021, Charlie had heart surgery in Portland. His heart valves normalized after that. His eating improved, but he was still not growing. His height and weight were still very low on the growth chart.

Charlie doesn’t fit a specific diagnosis. He has a very rare genetic disorder called Trisomy 9p, which is not hereditary. There are only a couple hundred children in the U.S. that have this same disorder.

Charlie is challenged with audio processing. He will hear you, but there is a delay in understanding what he is being asked to do. He doesn’t recognize danger, so safety awareness is always a big concern for his family.

Charlie is two years behind other children his age developmentally. There is no roadmap for him. His future is unknown.

Charlie is a happy little boy. He lives in the moment and life is simple in his world. He is becoming more independent under his parents’ watchful eyes.

Charlie loves his dog and cat. He also likes Hot Wheels cars and carries them around in his little backpack wherever he goes.

Charlie will be adopted as a Sparrow by Sisters Middle School. Sisters Middle School students will work hard to raise money for Charlie through sponsored community service.