Throughout Blair’s life, we met many other families going through similar battles with Sanfilippo. One of those families was the Siedmans. After Blair passed away in 2017, I was inspired by the Courageous Parents Network, a support website for parents, to start The B.L.A.I.R. Connection. Jennifer Siedman is Outreach Coordinator for this incredible resource. I had the pleasure of sitting down with Jennifer for an interview a few months ago. We compared our journeys of turning pain into passion and discussed the feelings of “super siblings”. Today, Courageous Parents Network posted the podcast in honor of National Siblings Day. Recording for CPN made me even more excited to start my own podcast for siblings, the Super Sib Podcast.
Due to the Coronavirus, many have been social distancing for months now. We take this seriously for kids like Haidyn, with Sanfilippo Syndrome. While we may not be required to stay home anymore, I will keep sharing the stories of Sanfilippo families like mine as a reminder to do your part and be cautious for the sake of others. Here's why you should do your part for Haidyn. Read More
Due to the Coronavirus, many have been social distancing for weeks now. Staying home is much more critical for kids like Seth, who has Sanfilippo Syndrome. Here's how the Karlsons' lives have changed because of the Coronavirus - and why you should stay home for Seth. Read More