Lively Leo

Alexis GiannattasioCommunity Stories, Family Stories, Toddler-Preschooler

When I was pregnant with Leo, some routine blood work indicated that my alpha fetoprotein levels were dangerously high, which is the marker for spina bifida. We went in immediately for a consultation with the genetics counselor and were prepared … Read More

Let Your Scar Shine

Alexis GiannattasioCommunity Stories, Family Stories, Teen

Aliah is your typical 13 year old girl who enjoys music, stories, time with her friends, participating in church life…and writing! We first were introduced to Aliah as a newborn with a bilateral cleft lip and palate. She had a few … Read More

Beauty with a Twist

Alyssa KirkmanAdult, Community Stories, Family Stories

Hi there, my name is Rasheera and I was born with 2 very rare syndromes: GoldenHar Syndrome and VATER Syndrome. Over the course of my life I’ve had 103 surgeries. Growing up and having such a rare condition, I didn’t … Read More