Arion B.

Condition: Hunters Syndrome
City, State: Williams, OR
Club: Hidden Valley High School Madrona Elementary School Sparrow Club Service Hours: 708
Date Adopted: 12/04/2014

Arion's Story:

Arion was only 18 months old when he started getting sick two to three times a month with pneumonia. Over the next six months, he continued to get sick and aspirated, choking on fluid in his lungs as he tried to breathe. Arion’s doctor referred him to a gastroenterologist in Portland who diagnosed him with a rare digestive system disorder called NTS. His condition was so severe, his adenoids had to be removed and he was put on a feeding tube for the next six months. Since then, Arion has continued to have problems and has needed surgery at least once a year. Last year was one of the worst. Young Arion, only eight, began showing signs of having a stroke. He was favoring his left hand over his right and having difficulty walking. His worried parents took him back to the hospital, where they discover a golf ball size cyst in his brain. Arion had intensive surgery to drain the cyst, but it was unsuccessful, so a shunt was placed in his brain to help with draining.

Arion has not yet fully recovered from the side effects of that cyst and his leg has been damaged as a result of the stroke.
Arion will most likely need many more surgeries and infusion treatments to keep him healthy.

Arion’s life is one of hope. He has come down a long, difficult road but it hasn’t stopped him from being a fun-loving boy. He enjoys playing with cars and throwing balls and especially being at school with his friends.

Arion will be adopted as a Sparrow to Hidden Valley High School and Madrona Elementary School in Grants Pass. The money students will raise through sponsored community service and fundraising projects will help pay for Arion's medical expenses.


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