“Aw he’s so cute, look at him sticking out his tongue!”
“How come his tongue is never in this mouth?”
“He was born when?! He’s huge!”
“What’s with his tongue?”
These are just a few of the many questions we received and continue to receive about our son Owen’s appearance. He was born with Beckwith-Wiedemann Syndrome, a rare genetic syndrome that increases his risk of developing childhood cancer.
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