Condition: Fragile X Syndrome
City, State: Bend, OR
Club: Westside Village Magnet School Sparrow Club Service Hours:
Date Adopted: 3/15/2018
Koen's Story:Everything was normal for Koen when he was born. His parents didn’t notice anything out of the ordinary until he started learning to crawl and that happened later than usual. It also took him longer than most kids to begin walking.
As a toddler Koen had trouble chewing and swallowing. He wasn’t talking very much at 3 years old. His teachers thought he had “Apraxia of Speech”, the inability to create words and he started speech therapy at his preschool.
Through a family member, Koen’s mom learned about something called Fragile X Syndrome. (FXS) Through more doctor visits and genetic testing, Koen was diagnosed with Fragile X.
Most children with FXS have behavior challenges. This can include ADD or ADHD, autism and autistic-like behaviors, anxiety, aggression (especially in males), poor eye-contact, and sensory issues such as difficulty with bright light, loud noises, or the way something feels (e.g. clothing, certain foods, etc.). There is currently no cure for FXS. Treatment usually involves intervention therapies, medications, or a combination of both.
Koen goes to the Alyce Hatch Center in Bend. At 4 ½ he is getting help learning to talk and trying some sign language to help him communicate better at home.
He is scheduled to have more genetic testing done in Portland in April. This will help his parents know how to better care for him and his special needs as he gets older.
Koen is an energetic, outgoing and happy little boy. He loves technology and playing games that keep his brain busy. He’s so smart! Koen also really loves the outdoors. He enjoys riding his bike, playing football, and helping his dad build things.
Sparrow Cash raised for Koen will help with ongoing medical expenses, travel to doctor appointments and the Fragile X Clinic in Southern California. Students at Westside Village Magnet School will “earn” Sparrow Cash by completing a minimum of 256 hours of sponsored community service.