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April 23, 2000
Salisbury Post; Rowan County, NC

Rose Post Column

Now Haleigh’s happy

BY ROSE POST
SALISBURY POST

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MOCKSVILLE — She blew us kisses.

Pressed her fingers to her mouth and grabbed those kisses and flung them into the air.

And we laughed.

Laughed and blew them back and begged her to do it again, and she did and we did, over and over again, and it was so wonderful I felt hot tears behind my eyelids.

Last June when photographer Jon Lakey and I first went to do a story about 3-year-old Haleigh Sommers and her parents, Tammy DiDominic and Billy Sommers, the only way her fingers could open was for someone to pry them open.

And she couldn’t raise her arms above her head without help.

But her mother was about to become the first parent in North Carolina to take a child more than 4,000 miles and 24 hours away to a special clinic in Poland that offered hope through intense physical therapy in a suit patterned after a Russian Cosmonaut’s space suit.

Those first big, bulky suits were designed to help the Cosmonauts maintain muscle tone in the weightless environment of space.

Now called “adeli” suits, they’ve been modified to offer help to children with cerebral palsy — and hope to parents like Haleigh’s who pray that someday their severely crippled daughter will be able to sit, to stand, to walk like other children — and open her hands and blow kisses.

So they raised money to help them pay for a trip that cost about $9,000 and went in August. And they’re just back now after a second month of treatment in March. And they’ll go again in June — and so will 60 Minutes II.

Whether or not that means Ha-leigh will be on CBS’s 60 Minutes II on a Tuesday night, Tammy and Billy don’t know. But Tammy’s been told a 60 Minutes crew will spend time during the month Haleigh’s there documenting the work at the Euromed Clinic on the Baltic coast of Poland.

Surely that says the treatment promises children with cerebral palsy enough help to attract the attention of one of America’s major television magazine shows.

And Tammy and Billy are ecstatic with the changes they already see in Haleigh.

After their first visit, she was a lot stronger, Tammy says. Control — of her head, back, trunk — “improved tremendously. She could sit better, hold her arms better, hold herself up better. And doing that makes her breathe better. And she was a little louder with her voice.”

She laughs at what she’s just said.

“That means she can scream a lot better,” she explains. “I didn’t see it right at first. People there thought she had improved a lot, but I couldn’t really see it. But after we got home, I started seeing it. If she slumped over, she could straighten herself up, where before you had to help straighten her up.”

“She can hold her arms over her head!” Billy proclaimed with glee when she got home after the second trip.

“And she can stand up in a walker,” Tammy adds, “and hold herself up, and as long as she remembers to hold on ... ”

As long as she remembers and they put something between her knees to keep her legs from automatically scissoring and hold her hips so they won’t slip out of joint, she can walk. Not perfectly. Not without that help.

“But it’s getting there,” her mother says.

Movement with her arms is almost normal now. Before, she didn’t have much range of movement. She does now. She can get herself on all fours and push until she’s sitting and hold herself up on her hands and knees and — oh, so much more.

It’s hard to believe the happy little girl sitting on the hood of her mom’s car outside the Mocksville Developmental Pre-School, pretending to drive her dad’s truck, so excited playing in the bed of the truck that suddenly we gasp, fearful for an instant that she’s going to fall out, is the same little girl we first met.

Cerebral palsy is permanent damage to the part of the brain that controls the muscles.

Haleigh’s brain damage came from being born three months early — and started the world spinning for Tammy and Billy.

They were so happy she lived, Billy says, that they didn’t really realize what the doctors were telling them when they said she had cerebral palsy.

But the realization came quickly — and brought with it tears enough to drown in. Tammy cried daily for more than two years. She still cries when their bright little girl “wants to do it all,” everything any other child can do — but can’t.

But it also brought an indelible commitment to do everything they can to help their daughter have a life as normal as possible.

So she and Billy and both their families stay alert to every possibility for anything that might help.

Tammy’s mother, Sally Kaiser of Brownsville, Pa., heard about the clinic in Poland on television. At first Tammy was skeptical, but she did the research, found out everything she could about it, talked to dozens of people, including consultations with Haleigh’s doctors at Wake Forest University Baptist Medical Center. They didn’t push it but wouldn’t say don’t go — and filled out forms and evaluations.

Everybody helped them raise money.

And they went.

The second trip was harder than the first.

“It was so cold you couldn’t get out,” Tammy says. “It was always raining or snowing. We got out three days during the month. The rest of the time it was really terrible, so we were stuck in the hotel most of the time and had to find things to do.

“I knew how long a month was and how hard it was, and Iwas ready for it but I didn’t want to do it again. But I wanted the results.”

And Haleigh did so much better than she’d done the first time.

“She didn’t have any bad days. She cooperated. I got to see her walk with a walker with braces on all by herself.” Her hip goes out and looks like it’s dislocated, because her hips muscles aren’t developed.

“So they gave us exercises for that. She has to work on her knees, forward and sideways, and do leg lifts. She walked on the walker every day. The last week and a half, she was so tired, she had big, black circles under her eyes.”

One day, Tammy says, she just started crying for no apparent reason.

“What’s the matter?” her mother asked her. “Haleigh, what’s wrong?”

“Do we live here now?” Haleigh wanted to know.

No, Tammy told her, they didn’t live there, and Haleigh begged to go home.

“She wanted to see her daddy.”

But the time hadn’t come yet, and more had to be done.

Work in the suit had started as soon as they arrived. So did electrical acupuncture and the spider exercise, in which bungee cords held her inside a cage so she could stand by herself. And all of it went on six days a week.

“She tolerated it a lot better this time,” her mother says, and could understand the children who couldn’t. One child screamed and cried constantly, despite everyone’s efforts to comfort him.

“But it really hurts him,” Haleigh told her mother.

“I know it hurts,” Tammy responded, “but they have to stretch the muscles so he can walk.”

“We don’t want to walk anymore because it hurts,” Haleigh said, and Tammy sighs, remembering the moment.

It’s hard to explain to an almost but not quite 4-year-old why she and her friends have to hurt.

Knowing people there this time made it much better, and they will know even more next time. Warm weather will help, too, and seeing the crowds that come to a beach town.

And they don’t have to worry about money for this trip. Their income tax return, Tammy says, “should give us enough for the third trip.”

“But we’ll have to go back to work,” Billy says, to raise a little over $9,000 they’ll need for the fourth because they’re sure she’ll need a fourth trip.

Tammy’s mother is already busy with fund-raisers in Pennsylvania and is planning to sponsor a spaghetti dinner, and Tammy hopes to have another bake sale and car wash in Mocksville.

“We did really good at that.”

And they’ll keep at it because they’ll need it for the fourth time and the fifth, if doctors still see improvement.

“As long as they see improvement, you go,” Tammy says. “We’ve got to keep going until they can’t do anything for her. Haleigh’s improved so much. It was six months ago that we went the first time, and the improvement is amazing. The doctors here are impressed.”

But the doctors there are cautious.

“There’s nothing to prove what did it,”Tammy says. “The suit? The therapy? The people there don’t know. It works, and that’s what counts.”

That.

And those kisses.

n

Contributions designated for the Haleigh Sommers Fund may be sent to Jerusalem Baptist Church, 3164 U.S. Highway 601 South, Mocksville, 27028, or to Fort Burd United Presbyterian Church, 200 Thornton Road, Brownsville, Pa., 15415.

   

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