It’s 1 AM, so I Must Be Tired

It’s 1 a.m. on a Wednesday, and I’m sitting in my living room debating my options while listening to my 11-year-old son repetitively clap and growl over the baby monitor we still keep installed in his room. Will isn’t sleeping tonight. Which means I’m not sleeping tonight. Although none of…

Developing a Treatment Plan for Sanfilippo Syndrome

Sanfilippo syndrome is a neurodegenerative disorder that affects about one in 70,000 births. Because it’s rare, many physicians are unfamiliar with it and its treatment. This could pose a problem, especially in an emergency. If your child has Sanfilippo syndrome, working with his or her primary care physician to develop…

My Child’s Just Been Diagnosed With Sanfilippo Syndrome – Now What?

If your child has been diagnosed with Sanfilippo syndrome, you may be feeling mixed emotions, from shock to concern to the relief that certainty can bring. The disorder is so rare that this diagnosis may have taken years. In any case, you may be thinking, “Now What?” Here is some…