El Paso family celebrates “Miracle Baby” during Mitochondrial awareness month

EL PASO, Texas -- September marks Mitochondrial Disease Awareness Month, and for one El Paso family, it’s more than just a date on the calendar it’s a time to celebrate the life of a little girl many thought wouldn’t survive past her toddler years.

Emma Boggs, who was diagnosed with Leigh’s disease, a rare mitochondrial disorder that affects roughly 1 in 40,000 children, recently celebrated her 10th birthday, a milestone her family calls nothing short of a miracle.

"I'm just in awe and I'm in awe of our God," said Courtney Boggs, Emma’s mother. "He's the only reason that she is doing well."

Leigh’s disease attacks the nervous system and prevents the body from creating the energy that organs need to function. It has no cure or FDA-approved treatment. For many families, the diagnosis comes with grim expectations.

“The doctors tell you when they give you the diagnosis: take your child home. There’s nothing we can do. Enjoy your child,” Courtney said.

Despite those words, Emma continues to defy the odds.

This week, surrounded by family, she marked her birthday with cupcakes, presents, and a special celebration that showcased just how far she has come.

To help raise awareness about mitochondrial disease, the Boggs family partnered with local high school football teams for a “Green Out” event during the Westside Bowl rivalry game between Franklin and Coronado high schools.

“Coach Torres from Franklin and Coach Prieto from Coronado got together and decided, ‘Hey, we're going to make this game about Emma and raise awareness for her mitochondrial disease,’” Courtney said.

Wearing green the color of mitochondrial awareness Emma and her sister Riley were invited to the center of the field to meet the players and take part in the coin toss.

The family says Emma is not on any medications, but continues to improve through therapy progress that is rare for children with Leigh’s disease.

“Most kids don’t get stronger,” Courtney said. “They don’t make progress. She’s making progress.”

As Mitochondrial Awareness Month comes to a close, the Boggs family is hoping Emma’s story inspires others and brings much-needed attention to a disease that too often goes unseen.