(posted January 22, 2021)
Hunter was born in Jefferson City, Missouri to a mommy and daddy who had hoped and dreamed for him! He has an older brother who is very protective of him and a dog named Gunner whom he loves to play with.
Like most 22q-ers, Hunter had feeding difficulties and aspirated the day he was born. He was in and out of the hospital about every other month for weeks at a time with respiratory distress. It was clear there was something more going on, but his parents struggled to find answers. Overall, Hunter was a happy baby who loved being snuggled.
It wasn’t until Hunter had been shuffled to several different specialists when he and his family met Dr. Alan Knutson, an immunologist at SSM Health Cardinal Glennon Children’s Hospital. It was obvious that Hunter had an underlying condition and Dr. Knutson would not stop until he found the answers. In January 2018, when Hunter was hospitalized for influenza, his family got the call with the results of his genome testing. Hunter had a deletion of the 22nd chromosome. Finally, everything began to make sense – Hunter’s delays, various illnesses and eating problems. His parents finally had the information and answers they needed. Within a few hours of Hunter’s diagnosis, five specialists – from cardiology to genetics – had tested and evaluated him. Hunter’s parents were told he had an immune deficiency, but also that he might not ever walk, talk or do a lot of things children his age could do.
Within a week of Hunter’s diagnosis, he and his family met with a Missouri First Steps counselor that set him up with physical, occupational and speech therapy through the Jefferson City, Missouri Special Learning City. Hunter was finally going to be okay!
Hunter still attends the special learning center and continues to receive all of the necessary therapies to help him excel. He still struggles with cognitive and developmental delays, but because of the dedication and determination of his therapists to help him succeed, Hunter has made significant improvements and has come a long way.
Although Hunter’s parents were told he may never walk or talk when he was 18 months old, they never gave up hope. Today, Hunter is a 4-year-old boy who loves adventure. He is walking, running and talking in almost full sentences! He enjoys being outside, climbing, fishing, swimming and dancing – anything he can do to be active. “Hunter exceeds everyone’s expectations every day!” Hunter’s mom exclaims with pride.
Hunter’s parents are so excited for him to continue preschool and to learn more about his colors and letters. They are looking forward to seeing him start kindergarten in the near future. As he continues through life, Hunter’s parents hope he is able to make lots of friends who are accepting of him.
“Never give up!” Hunter’s mother tells kids and parents living with 22q. “These children are capable of so much and will surprise you every day if you let them. Hunter is a funny and bright little boy with a big future!”