Michael Warechowski IV

Updates on our sweet Michael

Not going to Minnesota

on May 3, 2012

I finally got an opportunity to talk to Dr. Escolar up in Pittsburg, PA and we feel that is the best place for Michael. Dr. Escolar is not a transplant doctor and is considered by many as the “expert” on MLD. She has been doing natural history studies on MLD children for years and is leading many projects to help find a cure.

She will do a more comprehensive evaluation on Michael and should be able to give us a better idea of what to expect. Getting insurance approval is going to be a fight but we know in our hearts that Dr. Escolar and her team can provide Michael with the best care. We’re not sure yet when we are going – insurance approval could take weeks but we’ll keep you all posted.

As far as Michael, he’s doing ok but is starting to have some nerve pain and muscle spasms. I was up in the middle of the night with him about 4 times last night, once for an hour. We’ve also realized that once he stands up, he can’t get back down. Sad seeing my little boy go through this. And this is only the beginning. It hasn’t even gotten tough yet.

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