EL PASO, Texas - This week is Mitochondrial Awareness Week and an El Paso family is trying to raise awareness and fund research for a cure as their daughter fights the rare disease.
ABC-7 had the opportunity to meet little Emma Boggs, who is nearly two. She's bright, funny, and vibrant. It's hard to believe she's been diagnosed with a devastating disease that has no treatment and no cure.
It's an ugly diagnosis that leaves parents like Courtney and Jacob Boggs reeling, especially since Emma is doing great right now. She's meeting her milestones, walking, talking...but her mother says that could all be taken away in an instant.
"At any point she could start to decline," says Courtney. She could stop walking and talking and lose all her developmental milestones. It's so hard to wrap your brain around...There's nothing you can do. You feel so helpless because as a mom you want to do everything you can to help your baby. And there's nothing you can do."
Courtney quit her job as a Nurse Practitioner to stay home with Emma and her older sister Riley. Jacob adjusted his schedule to take care of Emma's 4 a.m. feedings, which are administered through a feeding tube.
The rare type of Mitochondrial disease Emma has is called Leigh Syndrome. The mitochondria are the powerhouse of the cell, that make 90 percent of the energy a body needs. As they start to fail, that leads to cell death and eventually, organ failure.
So Courtney and Jacob figured out what they CAN do, and that is spread awareness for research. They joined forces with other parents in the U.S. with similar battles, starting an awareness campaign on social media. They'd like you to help.
This is how easy it is to become a mito warrior: take a selfie or group picture with #togetherwefightmito, post it on social media, and challenge your friends to do the same. Then, donate at least a dollar to the United Mitochondrial Disease Foundation.
"I'm in fight mode," says Courtney.
There is also a fundraiser this weekend - Saturday, September 23rd, at "Get Lifted" Crossfit gym at 4617 Ripley. The family would love anyone and everyone to stop by, meet Emma, buy a t-shirt or bracelet and make a donation to fight mitochondria. Workouts will also be offered for anyone who wants to sweat, and first-timers are welcome. Let's come together to fight this awful disease!
If you want to raise awareness online, use the hashtag #TogetherWeFightMito