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exons 3 - 7

We have just recently got Johns diagnosis as "deletions in exons 3 - 7". Otherwise we know very little. John is 10 and still quite mobile although geting worse. Any thoughts or information that anyone has would be great.

James

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Permalink Reply by Kevin on August 12, 2018 at 8:08pm

Hi All,

My son was diagnosed with exons 3-7 deletion last year at age 8. He has muscle weakness and ADHD, but otherwise doing pretty well.

This thread has been very helpful for me understanding this specific deletion. Just wondering if there's any update on how everyone is doing.

Thanks,

Kevin

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Permalink Reply by Eileen DeLong on September 13, 2018 at 10:38am

Hi,

Jared is now 19 and Calvin is 22 both still walking. Seeing Dr. Wong in November. So lucky she moved closer to us since we had to stop seeing her due to insurance change. They both have problem with anxiety but doing well mostly.