Scarlett's Story

Today I am starting to take small steps to reach my big goals. As an adult with Krabbe Leukodystrophy, I feel it is my calling to help save babies from deadly diseases such as mine. There is an organization, The Hunter's Hope Foundation, that has inspired me from the time I became sick. It was founded in 1997 by Pro Football Hall of Fame member and former Buffalo Bills quarterback Jim Kelly, and his wife Jill, after their infant son, Hunter, was diagnosed with Krabbe disease. I have joined them in efforts to raise awareness of the importance of Universal Newborn Screening.
Most babies appear healthy at birth, full of life and possibility. Yet they could be hiding a rare or potentially devastating disease. By screening  every baby at birth we can prevent serious mental or physical disabilities, even death. And by making the requirement universal -in every state- we can ensure that no family will have to suffer unnecessarily.
Today, the diseases newborns are screened for at birth varies from state-to-state. Only one state screens for Krabbe disease, and only three are planning to add Krabbe by 2012. With Universal Newborn Screening, we can ensure every child is screened for Krabbe and all other possible diseases.
In my efforts to achieve Universal Newborn Screening, I have decided to get Krabbe Disease added to the Newborn Screening List in Tennessee.
I want to share with you this part of my life and let you celebrate with me the goals that are achieved. Of course I will need your help. Please remember me and what I am doing in your prayers. I will be forever thankful. With God we have hope.