Meet Jett, the sweetest and cuddliest little one-year-old who loves peekaboo, music and songs, playing outside, and playing with his dog, Stevie and his cat, Maggie. He also loves his musical stuffed otter.
Jett wasn’t rolling over and holding his head up like other babies his age, and his parents noticed these missed milestones. He was also having difficulty with feeding and gaining weight appropriately.
Jett was admitted to the hospital, where doctors placed an NG tube to help with feeding. This tube goes in through the nose, down the throat, and into the stomach so food can be given directly. Jett went home with the NG tube, but he still wasn’t making progress.
At 6 months old, Jett had a surgery to place a G-tube, a more permanent feeding tube that goes directly into his belly.
Jett went to Randall Children’s Hospital in Portland where he got a genetic test and was ultimately diagnosed with Leigh Syndrome.
Leigh Syndrome is a life-threatening mitochondrial disease that causes the central nervous system to degenerate and causes Jett to have seizures.
Jett takes medications daily to help prevent seizures and he does frequent physical therapy, occupational therapy, and speech therapy.
Currently, there is no cure for Leigh Syndrome, but every child’s journey looks different. Jett’s family continues to hold on to hope and cherish each moment and milestone along the way.
Jett will be adopted as a Sparrow to Ridgeview High School. Students will work hard to earn money for Jett through sponsored community service, supporting him and cheering him on as he and his family continue to navigate his medical journey.
