Condition: Stickler Syndrome
City, State: Bend, OR
Club: Summit High School Sparrow Club Service Hours: 530
Date Adopted: 12/15/2017
Ocyus's Story:Ocyus is a six-year-old little boy with Stickler Syndrome, a connective tissue disorder. It’s a genetic malfunction in the tissue that connects bones, eyes, and ears. This disorder is associated with problems of vision, hearing, bone and joint, facial and cleft palate… and is a progressive disorder.
For Ocyus, life has been a challenge since birth. He was born with a cleft palate, receding jaw, fluid in his head, and a hole in his heart. At five days old he was admitted to Doernbecher Children’s Hospital, where he stayed for thirty-one days.
At thirteen months old, Ocyus had surgery to fix his cleft palate. Because of his small jaw and overbite, he has always had speech problems. He goes to speech therapy which has been helpful, but he will need another jaw surgery in the future. This past August he had dental surgery to remove eleven teeth.
He’s had many ear infections and has had three sets of tubes put in his ears. He was constantly on antibiotics. He now deals with hearing loss.
On October 6th he had open heart surgery because the left ventricle heart valve was not working properly, and he was always tired.
You would never really know Ocyus has faced all the physical challenges he has. He loves soccer, but hasn’t been able to participate on a team recently.
He loves playing with his Transformers, Power Rangers, and Paw Patrol figures. His favorite things at school are the library and math.
He loves his dog, three cats, and most animals in general. Despite everything he’s faced with all his medical issues, Ocyus is a happy little boy and doesn’t let much get him down. He just wants to be a kid and enjoy doing all the normal ‘kid stuff’ that other children do.
Sparrow Cash raised for Ocyus will help with ongoing medical expenses, travel to Doernbecher’s, everyday living expenses… especially when his dad or mom must take time away from work after his surgeries. Students at Summit High School will “earn” Sparrow Cash by completing a minimum of 256 hours of sponsored community service.