MOCKSVILLE — “Haleigh fought them every step of the way — fighting,
screaming, kicking, scratching.”But Haleigh’s mother, Tammy DiDominic, is laughing happily as she
tells on her daughter.
“They told me they thought
she was very intelligent. She knew enough to fight them.”
And their trip to Poland for a
month of treatment aimed at helping 3-year-old Haleigh’s crippling cerebral palsy,
she says, “got results.”
Emotion spills over in her voice.
“It went really great!
She’s stronger. She can crawl better, sit better, hold her head better. She can pull
herself up. She’s not doing more things, but she’s doing them a lot better. She
even seems to be talking better. She puts more words together than she used to.”
Then she hesitates, thinking.
Maybe Haleigh — the first child in North Carolina to travel more than 4,000 miles and
24 hours to a special Polish clinic for intense physical therapy in a suit that looks like
a Russian cosmonaut’s space suit — is doing more.
“She still can’t sit
up,” her mother says, “but when I sit her up, she can sit up straight by herself
where before she slumped down. Now she can sit with her back straight and hold her head
much straighter. Now she can pull herself up to a standing position. She wasn’t doing
that at all. She can hold her weight better. She’s real good at that now. If
she’s supported, if she stands against the couch, she can hold herself.
“And I got to see her stand
on her own for a couple of minutes and take a few steps pushing a walker without her legs
crossing, which is really a great achievement. Those things are not going to happen
without the suit on. She’s not doing them on her own. But that was real exciting. It
was enough for me.”
Enough for now.
But the goal is more.
The goal is for Haleigh to do what
other children do naturally. Without travel to Poland and thousands upon thousands of
dollars.
To sit on her own. To stand, to
walk, to run.
So they’re going back to
Poland in February and more so Haleigh can have physical therapy while she’s wearing
that suit, and by the fourth time ...
Haleigh’s cerebral palsy is
damage to the part of the brain that controls the muscles, the result of her premature
birth. Her grandmother — Tammy’s mother, Sally Kaiser — heard about what
was happening at the clinic in Poland and told Tammy, who researched it and consulted
Haleigh’s doctors.
At first she was skeptical.
Then she became convinced they had
to give it a try.
Those suits designed for the
Russian space program helped cosmonauts maintain muscle tone in a weightless environment.
The Adeli suits adapted from them are modified to help children with cerebral palsy by
putting them into zero gravity for rigorous physical therapy aimed at training their
brains to use their muscles correctly.
The method is new and not
available in the United States, but doctors here are studying it, and Haleigh’s
doctors at Wake Forest University Baptist Medical Center in Winston-Salem helped her
mother prepare for the trip.
The clinic expects to treat 100
American children this year. And Haleigh is one of them because many people and groups
here and in Pennsylvania and Maryland, where her grandparents live, raised — and gave
— money to make it possible.
By the time they left on Sept. 13,
Tammy’s nerves were as tight as Haleigh’s muscles. She felt like a basket case,
but if Haleigh could be helped, she could handle it.
“But the days were
hard,” she says. Therapists moved from one type of exercise to another quickly, using
all the time.
It began at 9:30 each morning with
“magnetic acupuncture,” which sent signals through her muscles to her brain to
try to stimulate brain cells that aren’t working. Then came a “spider
exercise,” which required her to be put in a cage with bungee cords coming from all
four corners to help her stand upright with no one holding her. Then she lay on her back,
with pulleys and weights and cords attached so that she was was weight lifting.
“Then she stood up in a
stander for about 20 minutes,” Tammy says, “and then she went to gel
packs.”
Gel packs?
Tammy laughs again, happy
they’re home, happy for equipment like gel packs — and their promise.
“They warmed the muscles and
placed them on various muscle groups and then massaged her muscles.”
Finally, she was ready for two
hours of therapy in the Adeli suit — stretches, leg lifts, standing, squatting,
rolling on balls. Rolling on big balls forced her to put out her arms and catch herself.
By 2 each afternoon, she was
through — and too tired for lunch.
“By the time I picked her up,
she was exhausted and crying,” Tammy says.
When she woke up, they’d go
for walks or get a bus and go into town until dinner, unless it was art day — the
children worked with clay to exercise their hand muscles — or music day. She loved
the music days and learned two Polish songs. More exhaustion, but laughing, happy
exhaustion, and different from the terrible beginning when she bit and scratched the
therapists so they’d stop and cried for Tammy to make them quit hurting her and the
therapists asked Tammy not to come to the gym.
“By the second week, she told
me she didn’t want to walk any more because it hurt too bad,” her mother says,
“and I cried with her.”
The other mothers, especially
those who had been there before, understood.
“Their children had fought
and cried and they could hear them screaming, too,” Tammy says. “They helped me
a whole lot. If we had been there by ourselves, I wouldn’t have made it. We would
have had to leave.”
But they didn’t leave, and
Tammy learned that miracles don’t happen in that clinic by themselves. They happen
because of hard work.
One moment told her how much the
tears and pain were worth.
“We were sitting in the
hall,” she says. “Haleigh was on my lap. And she grabbed a stroller and stood
up, and I was, wow! That’s something she never could do.”
They’ll go again in February.
“We were signed up for
January, but because of the millennium, the January session will start later and work two
of the Sundays, and I don’t think she can handle that.”
So she put it off a month.
“I think she’ll still
fight them, but maybe she’ll be a bit more cooperative. I’ve been talking to
Billy about coming. Every morning and every night she’d go to bed and wake up crying
for her daddy. She was ready for his hugs and kisses.”
And next time Haleigh will already
know those two songs and a few words in Polish and be accustomed to Polish food —
even if she prefers home cooking. And Tammy will be prepared for a month full of emotion.
“Happy and sad,” she
says. “You cry and laugh and laugh and cry, like when she was born.” They were
so happy she lived, so happy to have her — and so devastated by her handicap.
Every child at the clinic was
tragedy and joy.
Like the boy who had crawled into
a swimming pool when he was tiny.
“He drowned,” Tammy
says. Drowned but didn’t drown. He lay in a coma for a long time — and was never
the same again.
“When we met him, his mom had
to hold him up and balance him. He was so spastic. He flung his arms around. But the third
week, he walked on his own. It was a tearjerker day. He kept on walking. He cried a lot,
too, but he was old enough to know what he was there for, and that day he walked he kept
on going, kept on pushing it.”
And they saw a girl who could only
walk with crutches, and then walked on her own. No crutches, nothing. They saw a boy who
arrived in a wheelchair — and walked out.
The therapists, their tools, the
families that come together, the children, the clinic — all of it, Tammy says, create
a unique place worth everything to a parent in pain who wants hope for her child. Even if
she finds it so hard she couldn’t wait to leave.
“I counted the days.”
And she knows she will count them
again every time they go back.
“We’ll go at least four
times. Until I feel she is as strong as she can be, until I feel they have done what they
can do, until she gets the most she can get out of it, we will continue to go back.”
But she hesitates.
“I’m hoping,” she
adds, “that we can raise the money.”
Each trip costs $8,000 to $10,000.
“Right now we have enough for
the second time, and we’re working on a third trip.”
Maybe a dinner where people can
come and meet Haleigh and see some of her souvenirs could help. But Halloween is here
already, and soon it’s going to be Christmas, and ...
She’ll have to think about
that later. Right now it’s back to work at Skyline Corp. and taking care of Haleigh
and trying to absorb the shock of what happened “in that one little month. She’s
been in therapy for three years. I didn’t know how a month was going to change her.
What were they going to do in 30 days that that hasn’t been done in three years? But
they did it.
“On the last day she took
three steps without crossing her legs. We did hold her hands on the walker, but we
didn’t hold her up. We were all looking at each other and saying, ‘Wow! Look at
that!’
“And her doctors are very
impressed. They think she’s going to be able to walk ... ” |
Rose Post