In Honor of Graham Law Hendrix- our son passed from SMA on 1/16/21. Had SMA been on the newborn screening in our state his life could have been very different.  Our beautiful son was born 10/26/2020 a completely normal healthy baby, by one month of life he had a slight cold and started having mobility issues in his limbs. We spent weeks at the children’s hospital in our state trying to figure out what was wrong with our son, when in reality, if SMA had been on the newborn screening in our state we would have already known. After almost 3 weeks of testing and our son getting sicker, we found out our son had SMA Type 1, by this point he was very sick. Three weeks later he was treated with a $2 million gene therapy drug called Zolgensma, which is a treatment for SMA, not a cure. There is no cure. We hoped for improvement and for a chance to give our son the best life possible, he was the happiest baby. While we did see some movement come back to his limbs a few weeks after his treatment, on January 15th Graham stopped breathing in his car seat when SMA reared it’s ugly head. We did everything to save him but the Lord had already called our baby home. Had we known our child had SMA before he got sick, we could have treated him before he showed symptoms and he could have lived a very different life. 

SMA(Spinal Muscular Atrophy) is a progressive, genetic neurodegenerative disease that affects the motor nerve cells in the spinal cord and impacts the muscles used for activities such as breathing, eating, crawling, and walking. It is the number one genetic cause of death for infants.

Currently, Alabama is one of ONLY 14 states left that DOES NOT test for SMA on the newborn screening. Once this disease starts progressing, the damage to the motor neurons is irreversible. There are currently 3 treatments for SMA but NO CURE. Which is why early detection is so important.

SMA affects approximately 1 in 11,000 births in the U.S., and about 1 in every 50 Americans is a genetic carrier. SMA can affect any race or gender.

There are four primary types of SMA—1, 2, 3, and 4—based on the age that symptoms begin and highest physical milestone achieved.

We have an incredible SMA team at Children’s Hospital in Birmingham. Some states don’t have this. Some families drive to other states for treatment. Alabama has the resources to help families and save these babies lives!!! 

Help us get our lawmakers and Governor's attention by signing this petition!