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17 Year Old Clayton with Williams Syndrome Inspires Others

March 19, 2014

Clayton Carroll is 17 and will turn 18 in May. Clayton was diagnosed with Williams syndrome (More info here and here.) at nine months old, following a seven day hospital stay with pneumonia. After his lungs were clear, his pediatrician heard a heart murmur and referred him to a cardiologist.

Dr. Noonan at the University of Kentucky (who discovered Noonan syndrome), immediately recognized Clayton’s characteristics with Williams syndrome and referred him for genetic testing. That day began a journey of ups and downs. Clayton has had hernia repair, severe colic as a baby, acid reflux, three sets of ear tubes and two heart caths in the past. He currently struggles with high blood pressure, SVAS and very low functioning cognitive abilities.

Clayton’s mother, Stella, decided many years ago to focus on advocating for Clayton and families who have children and young adults with disabilities and helping them understand the Special Education system and share disability resources available in the community. Stella currently works as a Special Education Liaison and facilitates all IEP meetings for the middle and high school in the district. She also provides trainings for parents through The Arc of Kentucky throughout the state of Kentucky.

Clayton is very involved in his school and participates in band, drama, and choir. He is the girl’s volleyball manger and this year was asked to be an escort by a senior cheerleader for the sweetheart crowning. He has participated in two drama productions at school with speaking and singing parts in both. He is a regular singer of The National Anthem at the high school basketball games and other community events.

Clayton also works two days a week at his favorite restaurant where he makes minimum wage. He is planning on working an extra day in the summer. His paycheck is loaded on a personalized debit card for him to be independent when out with friends. He keeps his wallet and carries a cell phone. He also shaves independently and takes his own medications. He will be attending prom this year with his peers.

Following graduation, Clayton would like to live independently (with a roommate who can provide assistance as needed) have his own car (with a driver) and work somewhere in the music industry. Clayton takes drum and piano lessons and loves Southern Gospel Quartets and Barbershop Quartets. Clayton also speaks at various events on grief. His father was killed in a car crash 2 1/2 years ago. He and his mentor wrote a song called “Dear Dad.” Clayton enjoys singing and sharing his story to others who are dealing with grief. Here is a link to the song “Dear Dad.”

Clayton lives at home on a farm with his mom and step-dad in Dunnville, Kentucky. He has an older brother JB Carroll (20), a step-sister Taylor (12), a step-brother Cole (11) and a half-sister Emma (12) daughter of his late father Brad.

Clayton says all the time, “I love life and I love being me!” Wouldn’t it be great if we could all be this way?

To learn more about Williams syndrome, you can go to www.wschanginglives.org.

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