“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.

Read More