Down Syndrome Regression Disorder Research and TNI for Down Syndrome
Today is World Down Syndrome Day. It is a global awareness day focused on raising awareness and advocating for the rights and lives of individuals with Down syndrome, with the theme “Improve Our Support Systems”. For those who don’t know, the date, 3/21, symbolizes the triplication of the 21st chromosome, which is what causes Down…
My son started regressing about one year ago (maybe a little before if I think about some small things I was seeing but didn’t realize were DSRD related). He was officially diagnosed on February 7th of this year. Dr. Anadani (his neuroimmunologist at OU Medical in Oklahoma City) sent me this on that day: “I…
What are we dealing with exactly with Down Syndrome Regression Disorder (DSRD)? It is still a very unmapped diagnosis but we are on the cutting edge again with Osiyyah. Some with DSRD sit and stare.Some wander aimlessly.Some get stuck in a routine.Some lose the ability to talk.Some become very agitated and angry.Some have extreme episodes…
Due to our recent life change with my 20-year-old son (Osiyyah) who has recently been diagnosed with Down Syndrome Regression Disorder (DSRD), I felt motivated to publish a short YouTube video explaining what DSRD is. Here is the link to that video – https://youtu.be/36T4rz44pU8 . Watch it in full below:
Welcome to our little public journal – a place where my mom, Kim Fish, and I will share the research we find and links as a community resource for a journey we never expected to find ourselves on. Please read to the end, as this summary ended up longer than I intended. But, how do…