Albuquerque Journal, N.M., Upfront column

July 30--Alorah Judith Plont came screaming into the world 12 years ago, her mother likes to say, and kept right on screaming through four months of a very stubborn bout of colic.

And then she stopped screaming and started smiling.

She hasn't stopped smiling. But she has stopped breathing, or nearly so, several times over the years. Trips to the emergency room, stays in the hospital, nebulizers, surgical masks, an avoidance of cats and so many different medications that the pharmacist knows the family by name became part of Alorah's routine.

Doctors called her illness reactive airway disease at first. Then asthma of a very brittle, very persistent, very serious nature. Then -- well, no one seems to know for sure what Alorah has.

Imagine hurting when you breathe, fighting to inhale.

And yet Alorah has kept on smiling, kept on moving and growing and breathing as best she can. The active toddler too busy for naps became the active schoolkid, playing on volleyball teams, playing saxophone in the Jefferson Middle School band, playing with her five brothers and sisters in a blended family that had come together as warmly as milk and honey.

Most children grow out of asthma. Their airways expand, their lungs strengthen. Alorah's condition, though, has become worse.

At times, it seems as if the air around her has been sucked away, like the oxygen she breathes has turned to mud.

"She is like a fish out of water sometimes," said her mother, Angela Strong. "Her lungs just shut down."

Alorah went from just flaring up during repeated upper respiratory tract infections to flaring up when the temperatures dropped, when the temperatures rose, when she moved too much, did too much.

Last semester, she was forced to finish sixth grade at home out of fear of her catching viruses and bacteria at school and of her not having the endurance to last a whole day.

She earned all A's.

She will be in seventh grade this year. But she will likely be relegated to home schooling again come August. She is too sick, too weak, too vulnerable to the agents in the air.

"The misery she has endured just breaks my heart," Strong said.

But Alorah endures with grace.

"I'm doing great," Alorah tells me as we sit one recent warm morning outside the family's Northeast Heights duplex. A smile spreads across her gentle moon face, bloated from the steroids she takes, the medication swelling her body so quickly that she is covered in stretch marks. "It doesn't bother me," she said. "I could be dead." That, of course, is her family's biggest fear. "Every time she gets sick and we end up at the ER is just terrifying," her mother said. Last spring marked a critical period in which Alorah's lungs could not function without medical intervention. Strong, a nursing student who works nights in an assisted living center, believes Alorah's body compensated for as long as it could but has worn itself out.

Local doctors are dumbfounded, unable to help the girl with the smile and the strawberry blond curls to breathe easy. In New Mexico, there are no teams of pediatric pulmonologists, no specialized hospitals capable of dealing with Alorah's confusing condition.

After months of pleading, researching and arguing, Angela and husband, Nathan Strong, a service writer with a local car dealership, were able to get Alorah in to see the doctors at the Breathing Institute at the Children's Hospital Colorado in Colorado Springs.

The Strongs have faith that the institute's team of specialists will figure out whatever is causing Alorah's illness and treat it.

"At this point, it is life or death," Angela Strong said. "Without a clear diagnosis, we can't properly treat her."

So they hold their breath.

Angela and Nathan Strong dated in high school -- he dumped her, Angela reminds him. They married other people, raised three children apiece, divorced, then found each other again two years ago. Their reconstituted family is an active one, involved in the Thunderbird Little League, ballooning and biking.

For now, though, it is all about Alorah.

Every month, one parent accompanies Alorah to her doctor visits in Colorado. The other children make videos to send her while she is away.

Money and time are tight. The family struggles, crammed into half a duplex where bunk beds for the boys take up space in the living room. Their Ford Excursion, the only vehicle they own that will make the Colorado trips, is 14 years old.

Still, they get by.

The Strongs have a motto: "Survive, thrive, adapt, overcome -- and kick butt."

They have a special one for Alorah: "Kiss my assthma."

Alorah said she dreams of that, of living like she used to, running, biking, hanging out with friends, not having to keep checking her oxygen saturation numbers and heart rate throughout the night.

But she does not cry. She does not whine. She does not scream.

"I write down my feelings in my journal," she said. "Sometimes I am sad."

Mostly, though, she keeps smiling. And hopefully, happily, she keeps breathing.

UpFront is a daily front-page news and opinion column. Comment directly to Joline at 823-3603, [email protected] or follow her on Twitter @jolinegkg. Go to www. abqjournal.com/letters/new to submit a letter to the editor.

Learn, do more

To donate to Alorah's GoFundMe account to help offset expenses and bills not covered under insurance: www.gofundme.com/ kissmyassthma.

To follow Alorah's story: www. facebook.com/kissmyassthma.

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