Myhre Syndrome

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 Hello everyone, I wanted to send a brief update. While we have been anxiously waiting the update on Mila‘s Chiari malformation and what to do next there was also this lingering piece concerning the genetics. We drew labs six months ago and we got the results this week. Yesterday we learned that our little angel has something called Myhre syndrome. We are struggling today to understand what this means and we are having honestly we are grieving. Right now all we need is that you pray for Michelle and I, for wisdom (James1:5) and peace (Philippians 4:6-7). We want to follow the Lord be the best parents we can and do what is right for Mila. All of that seems a little cloudy given the news.
Here is more information and we will update you as we process.

Please be praying and thanks

https://ghr.nlm.nih.gov/condition/myhre-syndrome#resources

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