www.joelsmithphotography.ca
Tiny Light Joey is an energetic twelve-year-old who never gives up. He
has an amazing memory, a great sense of humour, and incredible perseverance. Joey’s
favourite activities include singing, dancing, and watching Glee. He also
enjoys spending time on his computer or iPad, going to swimming lessons, reading,
and camping.
Joey
has been with his family since he was 19 months old. He was
not yet walking and was very passive and quiet. He quickly learned to
use sign language
and with the help of his older brothers, also learned to walk. However,
Joey
has faced many challenges over the years. He is developmentally delayed
and has
severe communication deficits. It took years of testing to finally
diagnose
Joey with a rare genetic disorder called 16q23.4 microdeletion syndrome.
He has
also been diagnosed with ADHD, autism spectrum disorder, and Tourette’s
Syndrome, plus he exhibits extremely challenging behaviours. In
addition, Joey suffers from a sleep
disorder and is awaiting EEG results to determine whether or not he is
having
absence seizures.
Despite his challenges, Joey is loved by many, especially his parents, siblings,
and puppy Shadow. His perseverance has allowed him to overcome so much. Joey
can read, ride a bike, and troubleshoot problems on his computer and iPad.
Though he is not yet toilet trained, his mother hopes that he can master that
one day as well. She encourages other parents to ignore what doctors say their
child can’t do, and celebrate what they can do. “Everything he has learned
inspires us to try even harder to advocate for him.”
Story by Emily Harrison
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