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Hi everyone,
Life is full right now. I am a mom to 5 kids from 10 years old to 2.5 years old. My brother, Osiyyah, with Down Syndrome, is 21 years old.
We have had a rough couple of years with Osiyyah. He has Down Syndrome Regression Disorder (DSRD). While I could go into a lot right here in this post, I will point you over to our other blog, which we are trying to add to/update more regularly and share resources.
As always, it has taken us a lot of persistence to get answers for Osiyyah. We have gotten some great answers are working with great doctors, but there is still so much unknown and so much we are struggling with. We have our blog open to be a resource for other families going through this difficult time. It is truly such a mixed up diagnosis and there is no easy in any part of it.
Please feel free to reach out to us with questions, information or anything we can do to help each other. This is all about community, because there is so much unknown.
This has led myself, my mom and Osiyyah's twin sister to get tattoos of the DSRD logo. We've also made shirts to wear when we run races and sports that say "This One's for O." It is a good reminder of not taking something for granted, because O used to love to run races, play soccer and all of that and now he cannot.
-Qadoshyah
