by Stacia McKeever on May 30, 2018

Kieran, our oldest son, is a happy kid who loves to read books, use his weed whacker, wander around with our chickens, and learn about tarantulas and didgeridoos. He brings us great joy, and we are so blessed to have him in our lives.

He’s nine now, but when he was nine months old, he was diagnosed with a rare genetic disorder called Williams syndrome. Williams syndrome is caused by a deletion of about 25 genes on the seventh chromosome and can lead to physical, cognitive, and developmental disabilities. It is considered a “spontaneous” mutation, meaning my husband and I are not carriers of the disorder.

As part of his syndrome, Kieran has a heart condition called supravalvular aortic stenosis, which requires periodic monitoring. He has intellectual disabilities and physical disabilities such as low muscle tone, making it more difficult for him to write and coordinate his movements.

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