Every child, in every state, needs to be tested for every disease possible. It is estimated that thousands of children die or become permanently disabled every year because they are born in the wrong state.
One of those children was my son, Grey. Greyson died of Krabbe Disease six days shy of his first birthday. Because of his loss, my family and friends, with the help of Hunter's Hope, fought tirelessly to establish "Greyson's Law". Greyson's Law (HB 1795) strives to increase the number of diseases screened for in Texas and has established a Newborn Screening Advisory Committee to help keep Texas proactive in the protection of it's littlest Texans.
In addition to bringing awareness to Universal NBS, Hunter's Hope provides the Krabbe community with the hope for a cure. Hunter's Hope provides us with amazing doctors that fight for our children every day. Research is so imperative! I'd hate to think of what Seth might be like today if not for the advances in PKU. . . because of research. With all three of my sons being carriers of Krabbe, I continue to hope for such advances.
Please join me as I continue to educate and advocate for the importance of Universal Newborn Screening. Take every step with me, in memory of Grey.