Advice for families of newly diagnosed children
We understand the range of emotions you might be experiencing soon after receiving the diagnosis of TRIO syndrome for your child or another family member.
This might validate some notable differences that you have been observing since birth and therefore feel like a relief. On the other hand, after receiving a diagnosis of TRIO gene mutation, many parents are overwhelmed by the fact that they know nothing about the syndrome and the road ahead. It might feel maddening to know that a lifetime of supports will be needed to help your loved one surmount challenges in many areas of life.
The good news is that we know that an individual with TRIO gene mutation is able to do and accomplish more than was believed in the past.
Parents were told their child would never walk and never communicate. We know now, that is not true. People with TRIO gene mutation today are walking, communicating, going to high school and to college.
Early intervention is key. Talk to your child’s doctor about potential therapies to help with development. Will there be some rough road ahead? Probably. But the Team TRIO is here to help.
Join us!
If your child has been diagnosed with TRIO gene mutation syndrome, please see the contact page and reach out to us soon.
You’re not alone!
It is the hope of our organization that you feel accepted and welcomed here and in society at large.
Together we will fight for a better understanding of TRIO gene mutation and create lasting connections along the way.