Today is #rarediseaseday. My sweet Niko has the double whammy of Williams Syndrome and autism. Williams is a fascinating, intricate syndrome accompanied by physical and cognitive challenges, but also joy, curiosity, and so much love. We are better people and a better family because of Niko. He’s a sweet, loving, curious 20-year-old boy. He still wants to sit on my … Read More
May is Williams Syndrome Awareness Month!
Once upon a time, an angry, tiny baby was born. He was sweet and cried constantly and shredded his tender little face with his fingers. We put socks on his hands and, with doctor’s permission, duct-taped them to the sleeves of his onesie so protect his skin. Apparently it’s fine to do so if the tape never touches their skin, … Read More
Today is Rare Disease Day. Williams Syndrome.
My sweet Niko has Williams Syndrome and autism. Williams Syndrome is an intricate syndrome caused by the deletion of the elastin gene on the seventh chromosome. This spontaneous deletion on one tiny gene has the ability to dramatically change our lives. He’s a sweet, loving, curious 19-year-old boy. He still wants to sit on my lap. He asks me to … Read More
Martin Lastrapes Interviews Me About Arterial Bloom. And Meet Niko!
What are you doing during quarantine? Why not listen to this super cool interview with Martin Lastrapes? Martin is an author /podcaster/all-around-character that lives here in Vegas. We were originally going to do the interview face-to-face, but then life and a global pandemic happened. We talk quarantine, Arterial Bloom, and my son bursts onto the scene at about the hour and … Read More
May Is Williams Syndrome Awareness Month!
Most of you are familiar with the fact that my 16 year old son has Williams Syndrome. It’s an exceptionally intricate genetic syndrome that affects so many things about him. His heart. His mental capabilities. He’s in high school and he doesn’t have the dexterity to manipulate a button. But he loves. Oh, how he loves! I posted about WS … Read More