We are the Ramseys. First came dad, a true Florida boy who loves all things local. Then came mom, who creates beautiful spaces and finds logic and order in chaos. A ways down the road (and very unexpectedly) came Weston, who is passionate about life and is hands-down the very best older brother in the universe. And then came Curren, our sweet, beautiful, magnificent reason for this blog.
My mission is to find the parents of other children with a HIVEP2 loss-of-function diagnosis and create a community to advocate for our children. As whole exome sequencing becomes more available, more children will be diagnosed. We need doctors and researchers involved to help us get on the map, and provide management and treatment options that allow our children to reach their full potential.