Parents of baby fighting genetic disorder push for new Virginia law

Photo courtesy: WCYB

RUSSELL COUNTY, Va. (NBC/WAVY) – A Virginia baby appears to be winning the fight against a rare genetic disease, simply because she was born in another state.

Now her parents are fighting for a change in the tests newborns receive in Virginia.

Ruby Kate Leonard’s parents are from Russell County, but they crossed over the state line to a Tennessee hospital for her birth. A few days after Ruby Kate was born the hospital diagnosed her with MPS I, known as Hurler Syndrome. It’s a disease that affects the organs and skeletal system. It can be life-threatening. Most of the time, the symptoms don’t show up until the baby is at least six months old, but Tennessee requires doctors screen for the disease.

“If we would have had her in the state of Virginia, she would be at daycare right now with my three-year-old and we wouldn’t know a difference,” her father Elijah Leonard explained.

Ruby Kate was born July 13. Tennessee started testing for the disease only 12 days earlier.

“It’s a blood test that all newborns have. So, if they test positive, many times, intervention can be done and they can save them and they can be normal or near-normal people,” said Dr. Tom Makres, a pediatrician.

Because they caught Ruby Kate’s condition early, they were able to get her into treatment.

Now her family is working to get legislation that would require the test here in Virginia. Newborns in Virginia are currently screened for 29 disorders and diseases.