Our Inspiration
Our son Shane who is now 14 years old was born in 2010 at Dartmouth Hitchcock Medical Center in Hanover, NH. Probably a good thing too as it wasn’t long before Shane found himself with a team of fine doctors.
Several months after arriving home, things just weren’t right. Shane was starting to have trouble nursing, sleeping, reflux, and his movements were slow. He wasn’t exactly developing like your typical 6-9 month old—the term “Failure to Thrive” was thrown around a lot. But really, what is “typical” or “normal”?
We continued on the current course with doctor follow-ups, more referrals, tests, examinations, long nights searching the internet, operations and many overnights at DHMC and Boston Children’s. To make a long decade story short, in the late spring of 2014 Shane was diagnosed with a rare genetic disorder, Cardio-Facio-Cutaneous Syndrome, or CFC, a RASopathy, or developmental syndrome that lies along the RAS pathway.
At fourteen, Shane is who Shane is and we wouldn’t change a thing. Currently a eighth grader, loving what he is able to do in the classroom and throughout his school day as he navigates neurodiversity on a daily basis. We, his family and folks around him continue to learn from his smile, stamina, excitement, determination and vigor.
-Jack and Marybeth Bailey