We have had a very busy day today at the Cincinnati Children’s Hospital. Jackson is doing a lot of assessments and tests that will further Fragile X Syndrome research and also give us more insight into his specific diagnosis. With Fragile X, there are things like methylation that play a part. For Jackson, he has methylation mosaicism; partial methylation, which means his brain is partially generating the FMR1 protein that’s needed for brain development. That is a great thing!! Other children with Fragile X could have full methylation, which means no protein is generating.
Our long term hope is one day doctors can use this research and tests to find a way to replace the impacted gene or add the missing protein. Until that day, we live our lives to the fullest. We might have to take the scenic route some days, but we wouldn’t have it any other way.
Now it’s off to bed…we are all exhausted!
XOXO
Our Fragile Xperience 
Love Grandpa
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Every rockstar needs a rockin’ management team — I’d say Jackson got one! So proud of all of you and your approach to this journey.
Will be cheering from the cheap seats! :0)
Love you!
On 7:13pm, Mon, Jan 13, 2020 Our Fragile Xperience cdcjdc1617 posted: ” Jackson was a rockstar today!! He had 3 assessments, > a NIRS test, EEG and some blood work done today and he crushed it all!! We > have had a very busy day today at the Cincinnati Children’s Hospital. > Jackson is doing a lot of assessments and tests that” >
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