Greyson’s Gift – Texas Newborn Screening Law Changes

I met this family online a few weeks before her beautiful little boy, Greyson, passed away from Krabbe’s disease.   Her situation not only makes me sad because her Greyson passed away before his first birthday, but it also makes me mad because his death could have been prevented, as Krabbe’s disease is treatable if caught early enough.  Many states test for Krabbe’s disease in their newborn screening group, but for whatever lame reason, Texas does not.  She wants to advocate change for all children born here in Texas, and I will do whatever it takes to help her make Grey’s Gift a reality.

Comments

  1. I can’t thank you enough for helping me to get Grey’s story out there. I was great to be able to finally talk to you tonight, just so easy. I’m so glad, that through our babies, we have connected.

    Forever Grey’s Mom,
    Nicole