8 year old Living With Williams Syndrome

Joy Hollowell

Updated 1 year ago

Hearing loss, cardiovascular disease, developmental delays- those are just some of the medical problems that make up Williams syndrome.It’s a rare genetic condition that occurs at birth.Joy Hollowell introduces us to an 8-year old in Bucksport who’s learning how to cope with the condition and giving his school some valuable life lessons along the way.===== “It’s amazing how far we have come. I look at pictures of him when he was a baby and growing up and it’s just so rewarding to look at him now as my little man.”Christine Shorey’s little man has overcome some big hurdles. He was born with a rare genetic condition called Williams Syndrome, one of only about 20 – 30,000 people in the U.S have it.Shorey and her husband knew something was wrong soon after Cooper was born. “He did not pass his hearing test,” says Christine Shorey.At that time, doctors diagnosed Cooper with fluid in his middle ear.”And I was like, this isn’t right, there’s something more,” says Sborey.That mother’s intuition was proven right about a year later, when a pediatrician noticed the plates in Cooper’s head weren’t hardening up properly.”And she says, ‘I’m really thinking there’s something more to this,’” says Shorey.The shoreys learned Cooper had Williams Syndrome. In addition to hearing loss, Cooper has problems with his heart, eyesight, joints, and developmental delays, both physically and emotionally. The diagnosis hit Christine hard.”I shut down for two weeks. I totally shut down,” admits Shorey. “For him to have this label that he would never get rid of overwhelmed me. And finally my husband looked at me and said, Chris, we have a son that we need to raise together, you need to snap out of this.”She did, instead pouring her energy into finding out anything and everything about Williams Syndrome.Shorey now works closely with the Miles Lane school to make sure Cooper gets the help he needs. Three times a week, special education teachers work with the second grader on speech and occupational therapy. “Because then when he goes back in the classroom, he has strategies,” explains Donna Clarke, Assistant Special Education Director for RSU 25.And in the classroom, Cooper’s teacher wears a microphone to help him hear better.”We can’t fix the child, but we can help that child grow into whatever he can become,” says Clarke. “There’s no limit.””He has a very open, loving, unconditional love,” says Shorey. “I couldn’t ask for anything better than to get that hug. His eyes dance when he sees me. I could be away 5 minutes, walk into the room and get that all over again.”+++


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