El Paso parents look to find cure for daughter's disease

Emma (Courtesy: KFOX)

Emma is 3 years old and suffers from SURF 1 Leigh syndrome, the only case of its kind here in El Paso.

There are currently no treatments or clinical trials for this rare disease, but Emma’s parents are hoping to change that.

“Majority of children with Leigh syndrome die within a few years," said Courtney Boggs, Emma’s mother.

After doctors told the parents there was nothing they could do for Emma, the Boggs decided to take matters into their own hands.

"We started our own nonprofit organization where we choose where it goes and it's going to specifically fund the disease that Emma has."

The Boggs partnered with other parents and doctors to conduct a clinical trial that will cost around $300,000.

"This research will not only save Emma's life but also so many other children that are suffering from this devastating disease."

As the Boggs continue to find ways to fund a clinical trial, they say they will spend every moment with Emma until a cure is found ... hoping to keep her on this Earth a little bit longer.

"I don't even let myself think about the future. I can't go there. It's too painful, it's scary. I just live in the moment with her."

Emma's family are conducting several fundraisers throughout El Paso.

Their next event will be at Top Golf on June 24th. You must register by June 10th.

For more information on the Top Golf event and donations, you can do so here.

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