Learn more about Madison, an amazing warrior with a rare chromosomal syndrome. 5Q14.3 micro-deletion syndrome | rare syndrome | genetic syndrome | disability awareness | disability advocate | special needs | special needs family | special needs parenting
Read More“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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