by Tiara Jones
I’m Tiara and my son Max was diagnosed with partial monosomy 13q, which I was originally told wasn’t compatible with life. He is deaf blind (charge syndrome) with some cognitive delays. He has had severe cornea transplants and has a cochlear implant on one ear and plans on going bilateral soon.
Global Genes lets mothers and advocates like me know that we are not alone; there is a village of people who are fighting this battle beside me. I’ve always had a good support system with my parents, Max’s dad and his siblings and my extended family &friends. Max is 17 now and we have moved from Ohio to Massachusetts so that he could attend Perkins School for the Blind (the school Hellen Keller attended). I started advocating for Max 17 years ago and made it a full-time job when I created MaxWay1 advocacy group in 2015.
I love sharing Max story with other families as inspiration because he has beaten so many odds and I believe it’s through God and the love he gives Max and gives us to give Max. Max is an amazing boy who can do all things through Christ and I’m so proud to be his mother. I advocated to get him out of the MRDD system and into the Ohio State School for the Blind, and now have been able to get him into one of the five deaf-blind programs in the United States at Perkins. I’ve advocated to get him a cochlear implant when they told me he wasn’t a candidate because his auditory nerve was too small and it worked.
So I just want to thank Global Genes for sharing Max’s story and connecting us with other rare genetic families.
You can follow Max on Instagram
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