Take 2

We flew to Minneapolis this morning for our second of three visits to the University of Minnesota.  They are conducting a Natural History Study for Shire Pharmaceuticals.  This will be only a 2 day visit.  The first day (tomorrow) is clinicals and behavioral testing.  They will assess the kids' developmental ages on various categories.  This is always a long day, but the information gained is useful.  Wednesday is hospital day.  The kids go to the OR to get an ABR, MRI, lumbar puncture and EKG.  We will fly home Thursday afternoon.

This information may not be all that useful to us specifically, however this is the first and only natural history study ever done for children with MPS IIIA.  We are so proud to be able to participate.  Waverly & Oliver are doing their part to help find an effective treatment and cure.


Popular Posts