September 21, 2010

another test came back...

Today I heard from our genetic counselor at Children's Memorial. She called to tell me what we already knew- Pin doesn't have Nonketotic hyperglycinemia (NKH). As many of you may recall, this was our initial, heart-wrenching diagnose that left us stunned for several weeks. We feel SO grateful that we can 'offically' close that chapter, however our hearts go out to those who have children with this disease.

1 comment:

  1. Hello, I just came across your blog. We too have a daughter with EMEE. Grace was diagnosed on Aug. 23 at 6-weeks of age. The similarities between our children and challenges are striking. I invite you to check out our blog as well...

    I look forward to following your blog and hope we might have a opportunity to correspond via email in the future.