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Little warrior valiantly battles against serious illness

by Matt Harvey

ASSISTANT MANAGING EDITOR

STONEWOOD -- Heaven McIntire's little sister, Emily, is on the prowl.

Nothing strange about that. Emily turns 2 June 18 and has the energy of someone starting to explore the world.

Heaven would like to tear off the porch swing after Emily, tumble, get some grass stains. Nothing strange about that, either. Heaven turns 7 on June 11 and loves her baby sister.

Maybe Heaven can do that some other day.

Right now, she's busy. Hooked to intravenous tubes and on oxygen constantly, the sweet little girl from Stonewood is fighting a battle against serious illness that started about 16 months ago.

Fitful rest

A few people are working at 3 a.m. Some are watching TV.

Most are asleep.

It's not a restful time for Heaven or her parents, Jeff and Sherri McIntire. Each morning at 3, Heaven starts vomiting.

"She throws up, then feels bad all morning long," Sherri McIntire says.

Heaven sleeps fitfully, then wakes up about 2 p.m. Sherri spends the rest of the day giving Heaven medicine. About 6 p.m., Heaven is hooked up to the IV tubes. She gets her nutrition from that, Sherri says.

Life takes a

180-degree turn

Heaven was an only child for her first 5 years.

She liked gymnastics, and, of course, liked to play.

She also liked to tag along with Mom.

"She still has so much spirit when she feels well," McIntire says. "When I have to run to Wal-Mart or to the store, I feel so bad. ... She'll say, 'Mommy, if I was better, you'd take me, wouldn't you?'"

Gymnastics is not possible; Heaven needs a walker to get around.

She also mostly stays inside to keep away from germs. When she does go out, usually in the evening, she's tied to the IVs.

It isn't all bad.

Heaven paints. She also dabbles in sand art.

"A lot of things she doesn't do real well because her hands shake," Sherri says. "She can't do the finer things that take motor skills. But she colors a lot, does markers, things like that."

Although Heaven can't shop for clothes, her grandma, Susan Leuliette of Haywood, makes her outfits.

And there are the hugs from little Emily.

Diagnosis

Heaven was diagnosed with idiopathic severe aplastic anemia in late January 2000.

Aplastic anemia, according to www.intelihealth.com, is a serious condition in which people have low levels of red blood cells, white blood cells and platelets. Red blood cells carry oxygen, white blood cells fight infection and platelets prevent bleeding.

The bone marrow doesn't produce enough stem cells with this condition, according to the Web site. Stem cells are the "mother" cells for red cells, white cells and platelets, the Web site says.

Aplastic anemia is rare, striking only two to six of every 1 million people annually in America and Europe, www.intelihealth.com says.

Heaven's case is even rarer. She was diagnosed with a severe case of aplastic anemia, Leuliette says. And doctors don't know what causes the idiopathic form of the disease.

Treatment

Doctors decided to treat Heaven with a bone marrow transplant. Emily, less than a year old then, was the donor.

Doctors performed the transplant in March of 2000. It was a success, Leuliette says.

But Heaven's immune system became fragile, Jeff McIntire says.

Heaven has had problems with her lungs since last July, the family says. A virus and a fungus produced a grapefruit-sized growth on Heaven's lung, the family says.

Those conditions have cleared up, according to tests, but Heaven still has trouble breathing.

Heaven also was stricken with shingles in October. Shingles is caused by the same virus that produces chicken pox. Huge, painful blisters spread across the lower half of Heaven's body.

Heaven was unable to walk and her leg muscles withered. That's why she now needs a walker to get around.

"It makes me appreciate life a lot more," Jeff says, "just seeing what she goes through and how strong she is."

Closer ties

The family has grown much closer during the illness, Sherri McIntire says.

"There's no other person in the world who knows what I'm going through right now except for him," Sherry says of Jeff. "That's the only thing we can count on, that we have each other."

When Heaven needs to travel to see her doctors at Duke University, all four McIntires go along.

At home, Jeff, 29, and Sherri, 26, share in the care. Sherri says she gives the medicine because "Jeff's not real comfortable with it." Jeff "gets up with her at night so I can get some rest," Sherri says. "I've been trying to go to work a couple days a week to help out a little."

Jeff has been laid off from his job at AFG Industries-Fourco Glass Co. in Taylor County for about six months. In some ways, perhaps, that's been good for the family.

But soon, Jeff and Sherri will have to pay the full cost on the insurance that was provided through AFG. That will be $655 a month, Jeff says.

The McIntires likely will have to come up with the money. Staying in a motel on a medical trip to Duke, for instance, costs about $2,000 a month, Sherri says. The insurance paid for that. It also helps pay for the expensive medication Heaven must take every day. One such treatment, which goes into Heaven's IV, costs $800 a day, Sherri says.

Community support

Family, friends and people throughout the area have helped.

Heaven's school is Norwood Elementary. The family assistance program there has raised funds. For instance, more than $1,000 was raised through a flower sale this week. Other schools and businesses participated, said Julie Gaston, who coordinated the event for Norwood.

"We have a wonderful community," said Norwood Principal Phil Brown. "They have taken that challenge of helping the McIntire family to heart."

A spaghetti dinner fund-raiser also was held this week in Clarksburg. An elimination dinner is set for May 18 in Anmoore. And Gaston says a car wash will be held in June.

About $17,000 has been raised so far, Leuliette said.

Sherri also praises her boss, Dr. Shelby Ford of Buckeye Run Veterinary Clinic in Salem. Ford has allowed Sherri great freedom in her part-time job.

"The support's been absolutely unreal," Sherri says.

No sense of normalcy

There won't be picnics for the McIntire family this summer. Or trips to an amusement park. There's no sense of a normal life -- not for Jeff, not for Sherri, not for Heaven, not for Emily.

"It's been over a year and a half," says Sherri, "since we've been able to do anything as a family, because one of us is always here with Heaven."

"I feel really bad for my daughter and her husband," Leuliette says. "It's hard for him to go out and look for a job when he doesn't know where he's going to be from day to day with Heaven.

"My daughter has applied twice to do her last semester of college. She's a veterinary technician and has had to pull back because of the illness. There's no way she could do school and then possibly have to travel to Duke at the same time."

As for Emily, "she has more or less grown up a lot differently than a regular child would," Leuliette says. "She has been tossed and moved and been in motels."

Uncertain prognosis

Heaven's lung doctor at Duke is an accomplished physician, Leuliette says. But the doctor is perplexed by Heaven's lung problems, Leuliette says.

"The doctor has done everything she knows to do," Leuliette says. "She said that all we can do now is pray."

"They're letting me know to be prepared if something might happen," Sherri McIntire says. "I still have the hope there, though, because I see her smiling every day."

While they wait on that uncertain future, Sherri, Jeff, Heaven and Emily are getting in plenty of love.

Certainly, much of Heaven's life has been hell.

But God has given the McIntires and our community something, too.

A little Heaven on earth.

Assistant Managing Editor Matt Harvey can be reached at 626-1032, or can be reached by e-mail at mharvey@exponent-telegram.com.

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