In February 2016, our family was given the devastating news that our 7 month old Cove Marie Ellis was diagnosed with a rare genetic condition called Krabbe Disease. We have since discovered that this could have been treated at birth if she had newborn screening.

As one of your constituents, I would like to ask for your help in bringing attention to  newborn screening.  For years, thousands of children have died and thousands more have become permanently disabled because they were not screened for all possible diseases at birth. This issue still exists today.

My heart breaks for children who are born in our state and not given a fair chance at a healthy life...

Krabbe is a rare, fatal genetic disorder that affects the central and peripheral nervous systems. Children affected by Krabbe suffer greatly and typically do not live beyond their second birthday.

You can prevent other children from needlessly suffering by sponsoring an amendment to the current newborn screening laws in our state. Like many other diseases, Krabbe Leukodystrophy is only treatable if diagnosed before the child is symptomatic. Cord blood transplantation has proven for many to be life saving treatment that can give children with Krabbe the potential for a healthy life, something many children never had.

I am asking you to advocate for expanded newborn screening in our state and that you sponsor legislation to add Krabbe and five similar disorders to its newborn screening panel. These Lysosomal Storage Disorders can be cost effectively screened together and must be diagnosed early to save children's lives!

I appreciate your consideration on this life altering issue and look forward to our future correspondence.

For more information on Cove and her journey, please visit her webpage at https://www.facebook.com/Miracle-For-Cove-1566917823598183/?fref=ts