Major updates!


It’s been too long since my last post. Part of me just hesitates to share information that is not really mine, it’s my sons. I also realize that Ben’s dad and I do not see eye to eye on what to do with all the information Ben has provided to us. Then last week I received an email. From another mom. A mom of a son. A mom whose son has the same variant as Ben.  A mom who has been searching for answers, just like me. A mom who stumbled upon this blog and found some. A mom who wants to share too. A mom who gets a little relief knowing she is not alone. And a son. A beautiful son who looks like Ben. Who is smart like Ben. Who makes others happy, like Ben. One day there will be a mom who is pregnant. She will be told her baby has a syndrome. A syndrome which will have a name. A syndrome that involves a gene called ZNF462. There will be hope for her. She will be able to connect with us. She will be able to look forward to meeting her sweet, perfect baby. She will know that with help her baby will walk, talk, go to school, and make her heart melt every day. All that because of Ben and others like him who survived a genetic variant which resulted in medical issues they might not have survived with had they been born just a decade earlier. “We make a living by what we get, but we make a life by what we give.”-Winston Churchhill

3 thoughts on “Major updates!

  1. Awww….. you just left my house with Ben, and I hadn’t seen this yet! Yes, Ben is a beautiful miracle, and a joy to be around. You are in a way paying it forward with the information you have learned, and the trials you have journeyed through. I can relate in such the same way, but with differences with my grown son,
    . The best thing to do is use what you have to help others from what you learn…. You are amazing and so is Ben!


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