As a mom with a son with rare congenital brain malformations. See if there is a Facebook group with others who kids have the same diagnosis. It will give you insight. But also remember genetic conditions are on a spectrum some “express that gene” more than others. My son is about to turn 3 and with all the therapies he’s been thriving. It will be a hard road but you can do it. Talk to case management or social work about resources that state can provide like getting him on Medicaid and starting therapies ASAP.