Las Vegas parents shining light on son’s rare disease on National Rare Disease Day

LAS VEGAS (KLAS) — The last day in February is National Rare Disease Day which lands on a rare day today — Feb. 29 — and two Las Vegas parents are shining light on their son’s rare disease.

Las Vegas Raiders offensive lineman Brandon Parker and his wife Dominique have two young children. Their 1-1/2-year-old son, Elias Parker, was born with a mutation in his genes that affects all the systems in his body.

It’s an ongoing battle for his parents.

“You can feel like you have everything in control, and everything is going well and then next thing you know you find something out. Maybe he has a heart problem and then you get past that heart problem. Then next thing you know he has a lung problem. So, it is sort of like that,” Dominique Parker said.

MEF2C is an extremely rare genetic disorder. Only about 350 cases are known worldwide. Half of all those are right here in the United States.

The disease can affect a person’s breathing, muscle and brain development along with severe autism-like abnormalities.

There is currently no treatment and the Parkers often fly to Salt Lake City to see doctors.

“Not a lot of doctors know what that looks like, so they are just treating his symptoms at the moment,” Dominique said.

They’ve helped with developing a foundation to raise awareness, gain a better understanding of it and bring families like theirs together. “We realize there may be no cure, but we just want to help other parents with resources,” Brandon said.

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