Garland teen raising profile of little-known disease

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by JASON WHITELY

Bio | Email | Follow: @jasonwhitely

WFAA

Posted on August 29, 2011 at 10:25 PM

Updated Tuesday, Aug 30 at 4:11 PM

GARLAND — Look past the oxygen tubes, and Grant McElveen looks like a typical two-year-old.

"Unless he's compared to other two-years-old in size, I don't think you'd know anything is wrong with him," said Shawna McElveen, Grant's mother.

Grant suffers from mitochondrial disease, which is a condition without a cure. Essentially, it means his cells don't produce enough energy to run all of his body at the same time.

The boy fatigues fast, gains weight slowly, and can even stop breathing and lose consciousness for up to 90 seconds several times a day.

Quitting breathing is something that has become so common in Grant's case, his family started recording it to show doctors.

"You can tell he's scared," McElveen said, "He can't control it. He started losing consciousness from it at four- or five-months old."

Mitochondrial disease isn't rare, but it's just not really known.

"It doesn't have a celebrity spokesperson and it just doesn't have the hype the other childhood diseases do," his mother added.

So Grant's big sister, Delaney Watkins, is trying to change that.

"I can't fix Grant. I'm not a doctor," the 14-year-old said.

So she did what teenagers do best.

Delaney resorted to Facebook to create a page for her little brother and help raise the profile of mitochondrial disease.

"She wanted to get 10,000 'likes' in a week," Shawna said. "At first, I said 'Oh, OK.' Then I really started to think about it and thought, 'There's no way she's going to get 10,000 likes.'"

Within the first five days, Delaney and her friend, Jennifer Gonzalez, encouraged almost 5,000 people to support the page.

"If more people know about it, more people are going to put more money toward research, not just for Grant at all, but toward Mitochondrial Disease Foundation," Delaney said.

Dr. Ryan McElroy, a pediatrician at Texas Health Plano, just started treating Grant. He said Delaney is doing what many doctors aren't, and spotlighting the disease.

"She put aside boys; she put aside being a freshman in high school to show her love for her brother to raise awareness for this disease that needs a lot of awareness," Dr. McElroy said.

Many children with the disorder don't survive their teenage years, but Delaney is determined not to sit helpless.

She hopes her Facebook page helps raise the profile of mitochondrial disease, leading to more research — and, eventually, a cure.

E-mail jwhitely@wfaa.com

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