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To Poland with hope

BY ROSE POST
SALISBURY POST

All they want is for 3-year-old Haleigh to be able to sit up.

To stand, to walk, to run.

Someday, maybe to dance.

Is that too much?

How can they want less for their beautiful, cheerful, eternally curious little girl whose mind flies free, even while her body is bound by cerebral palsy?

They can’t, of course.

They want Haleigh to do all the things other children do automatically, without needing to prop her up or strap her in or hold her in place.

Without needing to surround her with a “doughnut” pillow so she won’t tip over and land on her nose. Or cross her tiny legs that scissor on their own and carefully position her hands flat on the floor to support her — and then watch as she leans and leans and leans.

Without having to strap her into a “giraffe stand” that holds her upright. Without watching her “combat” crawl like a soldier on a battlefield who has to keep his body close to the ground — because she can’t lift herself up.

Without worrying when her daddy plays their special game, tossing her into the air and catching her in his outstretched arms, laughing and begging, “Again! Again!” while her mother holds her breath.

“It’s hard,” Billy Sommers says. “You want her to do things on her own. To play in the sandbox and on the slide. She can’t do that. But we carry on all the time anyway.”

He tosses her in the air and catches her and she laughs. He hides and calls her name, and she slides across the floor looking for him. He lets her pretend to ride on her big dog Toby’s back, and everybody laughs.

And they hope someday she will walk.

That’s why Tammy DiDominic will be the first person in North Carolina to take her daughter more than 4,000 miles and 24 hours away to a special clinic in northwest Poland for a month of intense physical therapy inside a suit that looks a lot like a Russian cosmonaut’s space suit.

Remember those big, bulky, funny-looking things cosmonauts used to wear?

Designed by the Russian space program for them to maintain muscle tone in a weightless environment, the suits — now called Adeli suits — have been modified to help children with cerebral palsy.

How?

The technology helps them use their muscles in zero gravity and lets them to go through rigorous physical therapy to “re-train” their brains to understand the signals when muscles move correctly.

Dr. Edward Dabrowski, director of neurology and rehabilitation medicine at Children’s Hospital of Michigan, says he affectionately calls them “bungee cord suits” because elastic bands help keep them together.

He has gone to the Euromed Clinic in Poland three times with five of his cerebral palsy patients and four had significant improvement after one visit. And he’s presently conducting studies on the use of the Adeli suits.

The therapy is not available in the United States, though some like Dr. Dabrowski are going there to learn. And desperate parents are going with hope, no matter what the cost, which runs high. Emotionally, physically — and in the pocketbook. One month for Haleigh will run more than $8,000. And chances are she’ll need to go back twice, maybe three or four times to teach her brain what to tell her muscles, like “Walk.”

A couple from the beginning

Tammy and Billy have been together 11 years.

“We met in Forestville, Md.,” she says. “He grew up in that area.’’ And she had moved there from Pennsylvania “because I wanted to get out of the small town I grew up in. Forestville is 10 miles from D.C.’’

Within a few months they were a couple.

“We were a couple from the beginning,” she says. And if they never had a wedding, well, they knew they were married. Their families knew it. They both have five brothers and sisters, and their families are compatible. They moved to Florida because they thought it would be a nice place to live — and warm.

“We tried to have a baby for about three years, but none came, and I decided I wasn’t going to have babies, and I just accepted that — and then I got pregnant,” Tammy says. “But I didn’t want to get married while I was pregnant.’’

They’d get married after the baby was born, they decided. But Haleigh came three months early, and life got caught “in a tailwind. It started spinning.”

And so far it hasn’t stopped.

Haleigh was born May 18, 1996.

“I didn’t know I was in labor,” Tammy says. “The day before I didn’t feel good. I slept all day long. I got up Saturday at 4 in the morning. My back was hurting so bad. I went to the bathroom, and I had a little bit of spotting. I got scared and called the doctor. He said, ‘Meet me at the hospital.’ She was born half an hour later.”

A permanent condition

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

“Haleigh’s brain damage came from being premature,” Tammy says. Doctors diagnosed her with periventruclar lukamalcia. That means one part of the brain was damaged during delivery and caused spastic quadriplegic cerebral palsy. It affects her muscles, which are tighter than normal, and her legs and arms.

And it affected their marriage.

“When you have a premature baby, the social workers help you get set up,” Tammy says. “On her birth certificate, Haleigh’s name is Sommers, but in the hospital, she was listed with my name, and the social workers automatically figured I was a single mother.’’ A single mother qualifies for more help for her child.

So marriage was out.

“Up to then, it was no big deal. It was working the way it was. It’s a very committed relationship, exactly like a marriage. We have just not walked down the aisle. We just don’t have the certificate.”

But the world was spinning, and they couldn’t think aisles or certificates.

“You’re happy that she lived,” Billy says, “and you don’t really realize what they’re telling you at the time when they say she has cerebral palsy.”

The realization comes later, he says, “and you try to accept it and do the best you can with her and show her a normal life.”

“I cried a lot,” Tammy says. “It’s very hard. I was in the hospital for four days, and I started crying then. Until last year, I cried every day. I still do at times. You don’t know the pain until you feel it. I didn’t really feel sorry for myself. I felt sorry for her. You don’t want your daughter to have a hard life like that. You want to make it the best you can. But you have to be strong and do what’s right for your daughter.”

Working out details

Before Haleigh was born, Tammy worked as a secretary.

“I was lucky,” she says. “The day I was supposed to go back to work, she was getting out of the hospital, and I got laid off. I got unemployment until she was 9 months old.”

But they wanted to move closer to their families — and found Mocksville. It’s not as warm as Florida but warm and close enough for a weekend trip to Pennsylvania and Maryland. They looked at the schools, and they found a house.

Billy, an electrical maintenance man, got a job with Lee Jeans; Tammy works in the service department of Skyline Corp., which manufactures of mobile homes. Haleigh goes to the Mocksville Developmental Pre-School until 3 each day and Northwest Child Development Day Care from 3 until 5 when Tammy gets off work.

“But her development is very slow,” Tammy says. “Mentally she’s a 3-year-old. She talks in sentences, long sentences. She’s very smart. She knows so much stuff she amazes me. She can count to 20 — she gets a little tangled at 13 — and knows her ABC’s and her colors.

“She just got new shoes, new braces, and I let her pick out the colors — lime green with yellow and red — so most of the time I don’t have any problem putting them on her. If she doesn’t pick out what she’s going to wear, she says, ‘What do you think you’re putting on me?’ I tell her she has to be 15 before she can pick out what she’s going to wear. I tell her she’s already acting like a teen-ager.

“But physically , she’s 4 to 6 months old. And she wants to walk. She begs me to let her walk. She wants to be able to sit at the table. She wants to do it all.”

Gathering information

Tammy’s mother heard about the clinic in Poland on television’s “A Current Affair Extra” and called Tammy.

“I called my sister and asked her to look it up on the Internet,” Tammy says, “and she got me the information.”

Tammy read and started making phone calls.

At first she was skeptical.

“We’ve heard about other things. We’d get our hopes up, and they turned out to be nothing, and then it hurts. But the more information I got, the more I talked to people who have been there ... ”

First she talked to Richard and Isabela Koscielny, who have become the link between Michigan and the clinic in Poland. Both are physical therapists. They emigrated to the United States in 1994 in search of more advanced treatment for their daughter who has cerebral palsy. Then Isabela’s mother sent them information on the clinic, which opened in Poland the same year they came here. They were skeptical, too, but became convinced, took their child to the clinic in Mielno two years later, and their daughter is no longer confined to a wheelchair.

Because they speak the language they became the unpaid contacts with the clinic and helped others make arrangements to go.

“The brain is like a computer,” Richard says. “It’s programmed to tell the muscles how to operate. But a virus has infected that computer and destroyed the program, so the muscles don’t know how to work. The suit puts the child in an environment where the muscles can work properly. It creates a feedback system where the muscle and brain are working together.’’

Isabela told Tammy that reading Haleigh’s medical reports was like reading her daughter’s — and she encouraged her to go.

Her second call went to Sharon Duddles, also of Bloomfield, Mich., and president of the Adeli Suit Fund. She got the same kind of reaction.

And she talked to two other families and to Haleigh’s doctors at Wake Forest University Baptist Medical Center in Winston-Salem. Dr. Andrew Koman is an orthopedic surgeon and head of the department of orthopedics at Bowman Gray School of Medicine, and Dr. Caesar Santos is head of neurology at Baptist Hospital. Dr. Santos had to fill out forms and send X-rays and evaluations because Haleigh has to be approved to go by the Polish clinic.

“They’re anxious to see what kind of results we get,” Tammy says. “They’re not pushing it, but they’re not saying don’t go.”

They sent the applications off in March — a videotape, an X-ray of her hips, doctors’ diagnosis and evaluations. Haleigh was approved.

“But the waiting list is so long,” Tammy says, “our date isn’t until Sept. 13.”

Expensive proposition

By Aug. 1, Tammy and Billy have to pay the Euromed Clinic $5,800 for the doctors, therapy and room and board.

“We’ll still have to pay for the plane tickets and for any other kind of stuff we need,” Tammy says, so the total cost will run between $8,000 and $9,000. “And we’ll have to make three or four trips, maybe five. I’m praying for three.

“We have some money saved,” she says. “We’re like $1,000 short of the first treatment now.”

People drop contributions into buckets with Haleigh’s name on them around Mocksville, and funds have been set up at Jerusalem Baptist Church in Davie County and Tammy’s home church, Fort Burd Presbyterian in Brownsville, Pa. And from donations of $5 or more for a Haleigh’s Angel — little clay angel pins her sister, Brenda Stout of Fredericksburg, Va., made.

“She sent me 100,” Tammy says, “and they went within a week, so I went to help her make some more. We made 240, and those were gone in a week.” She’s back this weekend, helping her make more.

And on July 17 they’ll have a bake sale and car wash at Wal-Mart.

“The girls we work with and both our families are going to help us.”

Looking to the end result

“I don’t think Haleigh really understands what going to Poland means,” Tammy says. “I haven’t mentioned therapy. She hates therapy.

“She was 3 weeks old when she started getting therapy. Now at 3 years old, she still can’t do anything. The way they’re doing it there, it’s working. But it’s very hard. I’m scared to death now. It’s six to eight hours of therapy a day for a whole month. She’s going to be in a lot of pain. She’s going to do a lot of crying. I’m going to do a lot of crying. But the end result — I’m petrified.”

She ticks off a laundry list of fears: She’ll have to buy water. They won’t be able to call Billy. She’s never been in an airplane that long. She’s never been to a foreign country. She can’t speak the language.

And she doesn’t want Haleigh to know any of that.

“She’ll tell you she’s going to Poland, but I don’t think she grasps what that means. And I don’t want her to know until we get there. It’s going to be be very, very hard. It’s going to be the hardest thing I ever made her do.”

But the benefits could ...

“You don’t want to get your hopes up too high,” Billy says. “But you can’t say no because you’d always wonder. We just want to do the best for our daughter.”

“I want her to have a normal life,” Tammy says. “I want her to stand up and walk when she wants to. I want everything. I want the world for her.”

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., 15417.