Largo mother, daughter fight the girl's cerebral palsy with therapies
Lorri Helfand, Times Staff Writer
In Print: Sunday, December 7, 2008
Sarah K. Atari kicks during her aquatic physical therapy at the Bonsai Holistic Spa in Largo. Her mother, Amy, believes alternative therapies — not covered by insurance — are helping. She’s holding fundraisers to pay for them.
Amy Atari just finished bathing her daughter one night in June, when she left the room to grab Sarah's pajamas. From her daughter's bedroom, she heard Sarah call out, "Mama!" for the first time. Atari cried. Sarah was four months shy of her sixth birthday.
Sarah has cerebral palsy, a term that describes a variety of neurological disorders that appear early in life and affect movement and muscle coordination.
She also has developmental delays. She can make sounds, like "uhs" and "mms," but cannot speak. She cannot walk or feed herself or use the bathroom on her own.
As Atari shared Sarah's story recently, the golden-skinned girl with dark curly hair and espresso eyes sat on a mat in the garage with homemade sandbags on her shins and thighs. The bags help stretch her tight hamstrings and keep her bent legs straight. Sarah sipped water from a Dora the Explorer sippy cup, although she now prefers the dinosaur characters from The Land Before Time series, her mom said.
Everything seemed normal when Sarah was born, Atari said, but when she was 5 months old her pediatrician shared concerns that Sarah wasn't sitting up yet. Tests didn't reveal cerebral palsy until last year.
Now, Atari says she's in a race against time.
"Sarah cannot wait. Sarah is an emergency situation. Why? Because she's growing," said Atari, 42, a stay-at-home mom who lives in Largo.
Her husband, Naiem, 58, is a salesman for a flooring company.
Sarah attends Nina Harris, a special needs public school. Tuesday through Saturday, Atari shuttles Sarah to a host of therapies: physical, occupational, speech, aquatic, horseback riding. Sarah's big sister, Bianca, 8, who has no disabilities, often tags along.
Most of the therapies are covered through insurance or charitable organizations. But since Atari learned her daughter had cerebral palsy, she has started immersing her in alternative therapies not covered by insurance.
There is no cure for cerebral palsy, but capabilities and coordination can be improved for some with therapy and training.
"I have to fight for my daughter, until I can see Sarah can walk and talk and do things on her own," Atari said.
One of the alternative treatments is hyperbaric oxygen therapy. For about an hour, Sarah sits in a pressurized chamber where she breathes in 100 percent oxygen. Some insurance companies cover the therapy for certain conditions, such as wounds or carbon monoxide poisoning.
Sarah also attended a summer camp in Orlando, where she participated in Conductive Education, an intensive system that combines education and physical activities to improve mobility and independence.
And she's had TheraSuit treatments, which use a special outfit with attachable elastic cords to gently stretch her body into proper alignment.
Sarah's rehabilitation doctor, Paul Kornberg, said he cannot recommend alternative therapies because there isn't sufficient scientific evidence backing them for children like Sarah. He's "leery but hopeful" about hyperbaric oxygen therapy.
"I wish I could say for Sarah these treatments have made a world of difference for her," Kornberg said.
But there are anecdotal accounts from parents and therapists who say alternative treatments work, he said. And Kornberg, who saw Sarah in June and again in August, said something she's doing is probably helping her.
For example, in June, she hated standing. In August, she was able to walk as much as 15 feet with help from a walker.
Atari swears by the alternative treatments and said her daughter is making major strides.
After a week of hyperbaric oxygen therapy, Sarah uttered "Mama" for the first time, Atari said.
In August, two weeks into Conductive Education, Sarah took her first steps with a walker.
And the TheraSuit improved Sarah's strength and coordination, she said.
So far, the family has spent more than $20,000 on alternative treatments, Atari said. She hopes to bring Sarah to Ability Camp in Canada, which provides Conductive Education and hyperbaric oxygen therapies. The cost for the camp is about $7,400.
Running out of reserves, Atari has tried a few fundraising projects. She makes chocolates that she sells to friends and family. And a couple of weeks ago, she held a garage sale, where she raised about $400.
She's planning more fundraisers, including a luncheon from noon to 2 p.m. Jan. 31 at Carrabba's Italian Grill on Tyrone Boulevard in St. Petersburg. And with help from a friend, she just started a Web site to update people about Sarah's progress and upcoming fundraisers. The site refers to Sarah as Sarah K. Her middle name is Khadija.
It's been a challenge dealing with Sarah's disability. Atari had no clue what to do at first. She was overwhelmed and sometimes still is. But her love for Sarah pushes her on, she said.
"God gave me this gift," Atari said. "He said: 'Your mission is that girl. And make her have a normal life.' "
fast facts
To learn more
To find out more about Sarah and her progress, visit GoSarahK.com or call Amy Atari at (727) 742-2897.
About the disorder
"Cerebral" refers to the brain and "palsy" to muscle weakness or poor control. It is caused by damage to one or more areas of the brain, usually before, during or shortly after birth. Brain damage associated with cerebral palsy does not get worse, but secondary conditions, such as muscle spasticity, can get worse, stay the same or improve over time. Cerebral palsy is not a disease and you can't catch it. It isn't curable, but training and therapy can help improve coordination and capabilities.
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