Ethan is from Eugene. He is 6 1/2.
Born at 39 weeks, Ethan only weighed 7 lbs., 10 oz., and was transferred to Children’s Hospital NICU. He spent 14.5 months in the NICU due to not being able to find Nursing Home Health. At 23 lbs., he had a tracheotomy, Ostomy, G-Tube, and a central line. He still has all of these. He has a condition called Congenital Central Hypoventilation Syndrome, Hirschsprung’s Disease, and Autism. The CCHS is exceedingly rare, with only 1200 cases in the world. His brain shuts off at night and does not tell him to breathe. He has 2 older brothers. We have no nursing coverage, so we take care of all of his needs.
Ethan is well known as the “Coach Andy Reed” baby, as his picture was taken in costume at Children’s when he was staying there. In the last year, Ethan has been attending Kindergarten. He plays baseball in Jefferson City in the Miracle League. He is still progressing with his communication device. He loves swinging, being outside, playing iPad, and riding his bike.
His parents are JoAnne and Patrick Nevins