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My son has an unknown type of pontocerebellar hypoplasia and there are thousands in the world with this. Support is there, but every kiddo is different. He is 1 of 5 and 1 of 25 known in the world with his two anomies on the gene CCDC88C. I have found no one with this genetic anomaly. Being he was a 26 week micropreemie, he was misdiagnosed so many times as providers would not look past his preemie status.
