Blog Posts

Friends and Supporters, Today we bring you a beautiful 7-year-old girl, Shadi, of California. We’ve unfortunately never had the pleasure to meet Shadi, but her mother, Roya, was one of the first Schaaf-Yang Syndrome (“SYS”) parents we were put in touch with.  This post is about Shadi; however, I’m going to take a quick detour to Roya.  We admire how much of an advocate Roya is for Shadi, and all her children.  Roya is a big part of the Schaaf-Yang community, which includes organizing and advocating for our children.  Roya – Shadi is lucky to have you. Shadi was

Friends and Supporters, Back-to-back days of Max!  This time, we are going to tell you the story of Max from Montana.  Max is another Schaaf-Yang Syndrome warrior.   Max is 9 years old, and we got to meet him in Denver last October, and what a treat.  Max is one of the early diagnosed SYS warriors and we’ve been watching his development on Facebook for the past 2 years after we received Hayden’s diagnosis.  We got to know Max’s parents, Jaimie and Steve, and there is no wonder why Max is a sweet kid – he gets it honest! Max

Friends and Supporters, Today, we are going to tell you the story of Max from Florida.  I was connected to Max and his mom, Helena, through a friend I went to college with.  We’ve never met Max or Helena in person, but that doesn’t mean they haven’t inspired us by their story.  The unconditional love and support Max’s parents show him is unmatched.  Also, have you seen a sweeter smile than Max’s? Max is a 3-year-old that has been diagnosed with a rare genetic disease known as TBCD.  TBCD prevents the body from creating enough myelin, so his entire

Friends and Supporters, Our next story is about another SYS warrior, Deanna from Colorado.  Deanna is now 14 years old, but we met her for the first time when we attended the Schaaf-Yang Syndrome conference in 2023 when she was 13. Courtney and I vividly remember the moment when we met Deanna.  We were making introductions for the first time in a large group of families attending the conference.  The parents of children with SYS were introducing themselves and their children.  However, when the microphone got to Deanna’s mother, Jamilyn, Deanna reached for the microphone.  Once she got the

The first story we are going to tell is about Nathan from California.  Nathan is one of the first people we met with Schaaf-Yang Syndrome (“SYS”).  Nathan is 9 years old and was diagnosed with SYS when he was one year old.  His parents, Leslie and Michael, have inspired us by their love and commitment to Nathan and we are happy to be part of this wonderful SYS tribe with them. Nathan is globally developmentally delayed and has difficulty with walking, eating, talking, learning, and fine motor skills.  In his 9 years, he has had over a dozen surgeries.

As a kid, I never went to sleepaway camp in the summer.  In fact, I didn’t really know it was a thing until I was an adult and I heard other parents sending their kids to camp in the mountains for a week.  It sounds like great fun for all.  The big kids get to go away for a week, meet new friends, and do a variety of outdoor activities.  The parents get a week break from yelling at the big kids to get outside and off their technology.  Sign me up! As Courtney and I were thinking about