2 PMG miracles
Feb 17, 2020
Year Condition Began: 2011
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What started out as my boy was just missing milestones, turned into more serious frequent pneumonia hospitalizations, weak immune system, troubles with aspirating and swallowing foods. We did genetic testing for years and everything kept coming back normal. He couldn't crawl or walk. His little body and muscles were weak. He ended up needing a gtube for supplemental calories.
I had my second son, they are only 12 months apart. I got him started with therapy right as soon as he started missing milestones also. I couldn't believe it. And didn't know why. So many unanswered questions and endless hours crying. What is wrong?
4 years after trying and searching and struggling, we started going to Mayo Clinic in Rochester MN. The best thing we could have ever done! The most amazing doctors but not only that, they gave us a diagnosis! We got detailed brain MRI scans back that showed the underdeveloped brains. Which has a name!
Bilateral perisylvian polymicrogyria.
Huge name, but meant the world to hear. They have seen it before but there is not enough research yet as to why. And the odds that both of my boys have it, is so rare. Rare little beautiful miracles I'm blessed with.
We have never been giving a prognosis, I just pray every night and push them everyday to succeed.
I'd love to help spread the word or meet other PMG miracles and help each other with advice or even just support!!!
1 comment
My grandson was just diagnosed with Bilateral Perisylvian syndrome. He has digeorge syndrome as well so we didn't think too much about the developmental delays and the aphasia. But he fell and got a subdural hematoma and they caught in on the CT scan and now three CT scans and six months later we have a diagnosis. I would love to follow your story or become friends on facebook, is there a facebook group? If not we should make one. I need to talk to someone with experience. It's scary having a new diagnosis and even the doctors don't know that much about it. I was glad to read your story and I wish you and your boys all the best.
Commented 6 years ago Janice 11
