Fayetteville, Ark. (KNWA/KFTA) — A new law is already saving lives thanks to the hard work of the Miller McNeil Woodruff Foundation.
It’s hard to tell by looking at pictures of Baby “M”, but she is living with a rare genetic disorder called Spinal Muscular Atrophy or SMA.
“When you lose those nerve cells, they’re gone for good. You can’t bring them back,” Cure SMA president Kenneth Hobby said.
It is a debilitating disorder. It can even be fatal.
“Children who are born with a very small number of genes, SMN 2 type genes, are very weak and floppy at birth and do not progress to sit up, to walk,” Dr. Kapil Arya with Arkansas Children’s Hospital said.
But Baby M was born at the right time. The Miller McNeil Woodruff Foundation helped craft a new law that took effect last year. Now, every baby born in Arkansas is screened for SMA. Baby M is just the second in the state to be diagnosed thanks to these new screenings.
“We have about 70% of all of the u.S. Now, all of the births in the u.S. Are getting screened for SMA and we’re hoping maybe by the middle to the end of next year that will be all, 95% of all births,” Hobby said.
That early detection is key because the earlier treatment starts, the less damage SMA does.
“Often, people wait for the symptoms to show up, and if you’re waiting for symptoms that actually means those nerve cells are now dying off,” Hobby said.
Detection is just the start. There are only a few treatment options and they are very expensive. So the Miller McNeil Woodruff Foundation continues to raise money to help Baby M and her new family. To get involved, click here.