Condition: Heart Defect, POTS, Mac Lung Disease
City, State: Sisters, OR
Club: Sisters Middle School Sparrow Club Service Hours: 259
Date Adopted: 12/09/2016
Ryan is an outgoing 11-year-old, and to look at him you would never guess he’s been dealing with major medical issues since birth. When Ryan was born, his heart wasn’t connected to his lungs. His blood wasn’t getting oxygenated and his parents heard the term “blue baby” from the hospital staff. He had something called SVC defect, and had open heart surgery at 7 weeks old.
Many surgeries followed to remove scar tissue as he grew. At 18 months he developed hydrocephalus, fluid on the brain, and a neurology team got involved. He was scheduled to have brain surgery, but the day before the operation the fluid had been absorbed enough so thankfully that surgery wasn’t needed!
Since then he’s had a stint put in his heart and endured other medical procedures related to that. He kept having episodes of dizziness for no apparent reason. In December last year he was tested and diagnosed with P.O.T.S., which basically means your heart races and you have lowered blood pressure. He gets headaches and sometimes even too much light causes him pain.
Ryan started to become afraid to do anything a normal kid would do, for fear that he would become lightheaded and feel like he might pass out. Most recently, in May 2016, he had a terrible cough and tightness in his chest. He was diagnosed with Mac Lung Disease, which is infectious. He has an appointment at the Mayo Clinic in Minnesota on September 9th to get tests done, so his family can get some answers and have a plan of what to do next.
Ryan loves to write music and plays the piano and drums. When he can be active, he likes to play soccer and just discovered he likes football too. He enjoys spending time with his service dog Buddy and also loves flying with his friend Steve. Ryan is close to his two brothers and his illness affects them as well.
Sparrow Cash raised for Ryan will help with ongoing medical expenses, travel, and everyday living expenses. Students at Sisters Middle School will “earn” Sparrow Cash by completing a minimum of 256 hours of sponsored community service.