Blog Posts

Friends and Supporters, The story today is about a handsome young man by the name of Remy from Florida.  I got to meet Remy and his parents, Brian and Bailey this past fall and it was pure coincidence.  However, someone I respect greatly told me recently that coincidences are just God’s way of remaining anonymous. I was at a conference for work in South Carolina for a couple of days.  While conferences are great for learning, what I typically find the most valuable is the personal and professional connections that are made.  This conference was no exception.  After a

Friends and Supporters, Today is a special day.  Not only is it special because we get to tell you about an adorable little girl named Hattie.  It is special because today is Hattie’s birthday!  This sweet girl turns 7 today. Hattie lives in the same neighborhood as us with her parents, Jessica and Kevin, and her big sister.  We’ve had several conversations with Jessica and Kevin about their experiences raising a child with a rare disease and the challenges that come with it.  What we’ve learned most from our interactions and seeing them around the neighborhood is hope.  To

Friends and Supporters, Today, we get to bring you the story of one of the newest members of the Schaaf-Yang Syndrome (“SYS”) community.  Today, we bring you 8-month-old Landon from Michigan.  We got to meet Landon and his parents, Micaela and Jeff last October in Denver at last year’s SYS conference.  This is the first time Courtney and I felt like we were mentors, and not just the mentees. Landon is an adorable little guy who I think was happy and smiling the whole time I saw him.  Like other kids with SYS, Landon struggles to accomplish most tasks

Friends and Supporters, We get the pleasure of bringing you a little boy from Georgia name Rhodes.  Rhodes is 6 years old and has been diagnosed with Schaaf-Yang Syndrome (“SYS”).  We got to meet Rhodes at the first conference we went to in Chicago.  Rhodes was joined by his mom (Laura), his grandmother (Pat), and his teenage brother (Collier). This was the first time I got to see a sibling of a child with special needs and how it impacted their life.  When I spoke with Collier, I asked him why he came to the conference.  I was expecting

Friends and Supporters, Today’s story is about a sweet girl with a smile that will melt your heart.  Her name is Katie, and she and her parents and little sister live just down the road from us in South Carolina.  We have had the great pleasure of meeting the entire family and appreciate the guidance we have received from Katie’s parents, Nick and Laura.  Nobody ever wants to enter the rare disease community by choice, but meeting people like Nick and Laura is one of the blessings of being a part of such a tight knit community. Katie is

Friends and Supporters, This Wednesday, I’m going to bring you the story of Tess, a beautiful 14-year-old girl from Maine.  I know Tess incredibly well.  I know Tess is a great skier.  I know that Tess doesn’t like long car rides.  I know Tess has a great older brother.  I know Tess likes listening to tunes, especially an indie rock band named Remember Sports.  I know all these things, but I’ve never actually had the pleasure of meeting Tess in person.  You see, I know these things from my favorite weekly podcast, Stronger Every Day (https://www.portlandrootsmedia.com/strongerpodcast). It just so