Inside Look : The Korbe Family
Twenty-two-year-old Quinton Korbe is the youngest of five children. He was born on March 5, 1997 with typical physical features of individuals with CdLS. He had five heart problems, feeding difficulties and was documented as “failure to thrive”. When he was born, his parents were told Quinton probably had CdLS, and it was later confirmed by Dr. Laird Jackson and Dr. Sechin Cho.
Quinton has severe developmental and cognitive delays. He is incontinent, has severe hearing loss, cannot feed himself and is non-verbal. Quinton had his cleft palate repaired at age three and a feeding tube put in at age six. He has had 15 surgeries ranging from many dental surgeries, hydroceles, throat dilatations, Tympanostomy (ear) tubes, etc.
Having severe cognitive delays Quinton is living life the best he can. At times, he hurts himself when he is in pain. Quinton needs total care. He has a very hard time getting settled and does not sleep well.
Simone, Quinton’s mother, thinks the most important tool the family has used is faith. They have seen miracle after miracle with Quinton. They have learned patience, try to keep a positive attitude and take it one day at a time. Family and friends have also been an important tool going through life with Quinton. Simone believes that one must ask for help when it is needed and if there is a question, ask the CdLS Foundation and always bring up concerns to their doctor.
Transitioning Quinton has been easy; he was homeschooled and still lives with his parents. They are trying to obtain a limited license in the state of Kansas to be paid providers for Quinton, as this would allow them the funding to hire caregivers, help with additional daily costs and ensure that his care and quality of life remain as high when they are deceased.
Quinton is socialized through outside activities and family vacations. They travel in their motor home during vacations since Quinton has a hard time adjusting to staying in a hotel. He also went through puberty late. Suddenly, he got hair on his legs and began sweating more, which caused a shift in what type of clothing he was wearing.
The major hindrance to Quinton’s transition was his constant dental issues with surgeries for the past 10 years. He would bite his wrist, bang his head on walls or run around in severe pain, at the age of 20, almost all his teeth were removed. It was very painful, but it has made things better.
Another issue was a lack of consistency in his schedule. His parents didn’t know how long he would be with them, so a steady routine wasn’t established. He is quite persistent with letting others know exactly what he wants and when he wants it. Aside from his struggles, Quinton is a happy and very healthy small adult.
When Simone was asked what she wanted the public to know about Quinton, she responded, “Please don’t ignore or turn away from Quinton. At least look at him and smile...accept Quinton and others with differences.”
