Scarlett's Story

You can take action too! Help save the life of a child!
Visit www.huntershope.org and learn about Universal Newborn Screening. (UNBS)
Contact your United States Senators and Congressmen and educate them on the inequity of Newborn Screening and its importance in saving babies' lives and billions of dollars now and in future generations. Ask them to make Universal Newborn Screening a Federal Law.
Learn about your state's Newborn Screening program and law governing what diseases your state screens for. If your state is not screening for the maximum number of diseases possible, contact your State Representatives and educate them on the status of Newborn screening in your state and urge them to take action immediately to ensure that every child in your state begins life with a fair chance to survive and live a healthy life.
Send a link to www.huntershope.org to everyone in your email address book and ask them to take action.
Note: See Take Action at www.huntershope.org

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 on the newborn screening list in Tennessee. I have a friend who is running for State Representative in the upcoming election. He is willing to help me reach my goal. If Charles Ray Rains is elected, I plan to work with him and other Representatives in Nashville and get all possible diseases, including Krabbe, placed on the state's newborn screening list.
As I move forward in this new chapter of my life, I plan to record everything that happens right here in my blog. 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.