On February 9th, Jill Kelly shared Hunter’s story before the Federal Newborn Screening Advisory Committee.
Along with other families, doctors, and foundations, Hunter’s Hope has been trying to get Krabbe disease on the Federal Newborn Screening Panel for almost two decades so that every child born in the United States is screened at birth and diagnosed in time to receive life saving treatment.
The decision made by this committee is a matter of life and death.
If Hunter was screened at birth for Krabbe disease he might still be here today.
But he was not screened at birth and therefore he was never able to get life saving treatment.
Jill shares the shocking results of the committee’s decision and how it affects every child born in the United States.
If you would like more information regarding Newborn Screening and how you can help us, please visit the Hunter’s Hope website here.
Learn more about our Podcast, Episode Guests and Hunter's Hope here.