Quest for a cure grows stronger

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Quest for a cure grows stronger

http://www.projo.com/ri/southkingstown/content/THE_GIRL_IN_THE_WHEELCH

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Sunday, May 11, 2008

By

Journal Staff Writer

Grace has her piano lesson with . " If she can do it now,

I want her to experience it, " says Grace's mom.

Six women lift beth Caldarone from her wheelchair, wrap her in

sheets and place her on a stretcher. Slowly, speaking different

languages, they lower her into the cold water of the stone bath.

beth shivers. Need- ing to use a wheelchair since the ninth

grade, the South Kingstown teacher has spent most of her life

fighting the effect of hostile genes. Slowly, cruelly, they have

ravaged the nerves that move her hands and feet, leaving them mostly

numb and useless. Unable to move her fingers and toes, she types by

striking her computer keyboard with a single reddened knuckle. She

cannot dress herself, wash the dishes or drive to the grocery store.

Should I ask for a miracle? she wonders.

She is, after all, in Lourdes, in southern France, a place of

curative waters and private healing. This is the sacred spot where,

in 1858, 14-year-old Bernadette Soubirous saw the Blessed Virgin

. Now, 150 years later, millions flock to the cool water that

flows from an underground spring.

Everywhere are the sick and the lame, children and adults suffering

from dementia and multiple sclerosis, epilepsy and juvenile

arthritis, diabetes and cancer … so many afflictions. Some people

seem so desperate.

beth wonders, Should I pray for a miracle for someone other than

myself?

BEFORE HER second birthday, beth had trouble walking.

Her father, a pediatrician, first noticed her awkward gait during a

family stay at a summer camp in Monticello, N.Y. She didn't walk; she

waddled.

Alarmed, Eugene Sidoti and his wife, RoseMarie, took beth to the

Albert Einstein College of Medicine in the Bronx, where Eugene was on

the staff.

A specialist there said beth suffered from idiopathic peripheral

neuropathy.

" That's what we called it for years, " says Eugene. It resembled a

neurological disorder called Charcot-Marie-Tooth, but CMT is an

inherited disease and there was no history of it in the family tree.

The Sidoti's four older boys were fine.

The family lived in a Tudor-style home in Eastchester, N.Y., about an

hour north of midtown Manhattan.

Eugene was stunned by the diagnosis. He had spent his career helping

kids get stronger, better. But he was hearing that his toddler

daughter needed metal leg braces with bars, hinges and springs to

move.

" I walked with my knees locked, " recalls beth. " My knees would

just give way. "

Some nights, Eugene and RoseMarie Sidoti cried themselves to sleep.

Why, asked Eugene, did this happen to my daughter?

MARYBETH MOVED from school to school in New York as her condition

worsened. They were places with too many steps or too many floors.

In elementary school, she sat on the sidelines in gym class. When the

kids jumped rope, she held an end.

By the fifth grade, she had to use both hands to grip a pencil.

" I just kind of adapted. "

In art class, she sometimes held her paintbrush in her mouth. Yet her

work was so good it was displayed in the local library.

In the sixth grade, she started using a walker and a wheelchair.

Because she wanted to attend a high school closer to her home, her

parents pushed school officials to include an elevator in their

renovation plan for Tuckahoe High School in Eastchester. But the

janitor kept the key, so beth had to find him every time she

needed to change floors. One day there was a fire drill. The teachers

and students fled, leaving beth behind.

In her small senior class, beth, voted " most spirited, " dated no

one. Wearing a pink and silver gown, she went to the prom with a

friend of an older brother.

LIKE HER FRIENDS, beth wanted to go to college, and, in spite of

her mother's concern, she considered schools hours from home. " But

you need so much care, " her mother worried.

Her youngest brother, , was a senior at the University of Rhode

Island, and college admissions offered her a first-floor suite and a

roommate who would also act as a helpmate. In return, her helper

would get financial aid.

Being a helpmate wasn't easy, recalls Carol Liu.

Liu took an Italian class with beth and thought she was " so

together. " Then, when Liu moved in with her, " I realized someone had

to take notes for her. " Liu crawled out of bed and was ready for

class quickly. " beth took hours to get ready. "

beth also needed help in the bathroom. " You have to be very

strong inside to trust a stranger to do that, " says Liu.

beth had a specially equipped van with a phone, a ramp, but no

lift. " If it broke down, we had to call Arizona, " her father says.

" She kind of stood out, " remembers Liu. " She really was That Girl in

the Wheelchair. Then she became That Girl in the Wheelchair who wore

a Giants T-shirt. "

After a rough start, the two became friends. During a spring break,

they flew to Bermuda. But once they got to the beach, Liu had no way

to push beth's wheelchair through the sand.

" She's not cheery, " says Liu. " At the same time, she has this sense

of, I can do this, or I can figure this out. She just pushes through.

She's very strong-willed. "

Still, beth disliked the role of the heroic, disabled student,

says Liu. 'Isn't she cute?' people would say. `She's doing so

great!' beth hated that patronizing approach. "

MARYBETH DID NOT return home after her 1990 graduation. Instead, she

moved to Narragansett and, two years later, earned a master's degree

in speech-language pathology from URI. That year, she got a job in

the Chariho Regional School District and met the man who would become

her husband, Caldarone, a volunteer firefighter who grew

up in South County. a basketball and baseball coach, was

working as a teaching assistant for special education students in

town Elementary School.

" She stalked me, " jokes who took beth on dates to the

Windjammer Club, Watch Hill and the zoo.

In 1994, the two married. beth wore a special gown that concealed

her wheelchair.

Both and beth wanted children. So doctors again probed her

medical history for signs of an inherited illness. They knew she

suffered from a CMT-like disorder. But they couldn't find any

evidence of it in her family's past. They concluded that beth

might have difficulty carrying and delivering a baby, but they didn't

think she would pass on her lifelong illness to her children.

When she got pregnant in late 1994, the doctors' concerns became

real.

At Women & Infants Hospital, doctors induced labor and eventually had

to perform an emergency C-section. Unable to stop the bleeding,

doctors sent her to the critical care unit of Rhode Island Hospital.

She woke at 3 a.m. in the dark, gasping, and somehow yanked a

breathing tube from her throat.

" When I came to, I didn't know I had a baby, " says beth, who was

then nearly 28. Her new son was in the neonatal ward at Women &

Infants.

Alarmed by her condition, her father was upset. " If you ever want to

have another kid, " he said, " you'll have to go through me. "

UNABLE TO PICK UP her son, beth found ways to be close to

. She tried a sling, a baby carrier, and finally just

crossed her arms around her son and held him on her lap.

Fearing that limited physical contact would keep from

feeling motherly love, beth talked to him, sang and read books

while his father dressed and fed him.

Five years later, she wanted another child.

Her husband, thought another child would be more than the

couple could handle. How much more can we take on? he asked her.

beth started crying.

We can do it, she said.

When her father heard, he hid his true feelings when he talked to her

about it. " Inside, I trembled, " he says.

Grace was born on Jan. 17, 2001. The delivery was uneventful.

beth, who had a scheduled C-section, had no problems.

Like her son, her daughter developed normally. She smiled, she

crawled, she pulled herself up, and she started walking.

" I said she was my angel sent to help me, " beth recalls.

Then came the day beth noticed her 2½-year-old walking with an

odd gait. She looked at her daughter's toes. They were turned in,

just like hers. She tickled her feet and Grace didn't react. She

couldn't feel it.

While apprehensive, beth didn't grasp the severity of what she

was seeing.

and beth's father took the toddler to a pediatrician, an

orthopedist and finally to a neurologist, who tested Grace in his

Providence office.

The neurologist was blunt. " Yes, she has what you have. "

Later, at her parents' condominium in Narragansett, beth closed

her eyes. She had her first migraine. She felt like someone had died.

" It was like a grieving process. Here was this child that I thought

would grow up one way, and then it wasn't that way anymore. "

The earlier doctors had been wrong.

They had ruled out Charcot-Marie-Tooth disorder because they had been

unable to find a carrier in her family tree.

The problem, they were to discover later, was that the mutant gene

started with beth.

De novo, the doctors said, referring to a Latin expression

meaning " from the beginning " or " afresh. " With CMT, the children of

an afflicted parent have a 50/50 chance of also getting the disorder.

had escaped, but Grace had not.

CMT, the Caldarones learned, is debilitating and progressive, but not

life-threatening. Although discovered in 1886, doctors are only now

beginning to easily recognize or understand it. " Historically, CMT

has been a mysterious disease, " says Scherer, associate

professor of neurology at the University of Pennsylvania Medical

Center.

The Caldarones put their daughter in leg braces. Later, beth told

Grace that they shared things, including a brain and an illness.

When she was 5, Grace asked, " Will I be in a wheelchair? "

DRIVEN ALL HER LIFE to defy the effects of CMT, beth is even more

determined to stop the disease from crippling her daughter.

Just before the holidays last year, she composes a letter to everyone

she can think of.

" Hey, it's me, " she types in her Kingston home, bringing her knuckle

down on the keyboard, a letter at a time.

She identifies herself as the woman in the wheelchair, " formerly

known as the girl in the wheelchair. "

Battling a debilitating illness isn't easy. But watching your

daughter fight it is harder, she writes.

Grace " continues to inspire us with her courage, " she says, but adds

that her 6-year-old daughter falls and has trouble holding a pencil,

opening a jar or fastening buttons. " What keeps us going is the

belief that a cure is just around the corner. "

beth explains that both she and Grace have an extreme case of

CMT, a disease that affects 2.6 million people worldwide. There is no

effective treatment and " certainly no cure. " Worse, she says, large

pharmaceutical companies are reluctant to conduct research into CMT

because it wouldn't be profitable.

But soon, researchers at Wayne State University School of Medicine

and elsewhere will experiment with new drugs and remedies in an

aggressive effort to treat, reverse and possibly cure the disease,

she writes. She urges everyone to send money to the Charcot-Marie-

Tooth Association in Chester, Pa.

beth's efforts pay off. She raises more than $60,000 from area

schools, individuals, family members and businesses.

THE WEEKLONG STAY AT LOURDES has not led to a miracle for beth or

Grace, who also enters the curative waters of the shrine.

" You always have that hope. It doesn't have to be immediate, " says

the 39-year-old beth, a speech and language pathologist at

Chariho Middle School. " Miracles happen in my life every day. "

Shortly after her seventh birthday, Grace rides a horse in Richmond

and spins on a swing at Therapediatrics in South Kingstown as part of

her physical therapy regimen.

She goes to Brownie meetings and at home she plays a beginner's

version of Beethoven's " Ode to Joy " on the piano

" I'm pushing all the time. If she can do it now, I want her to

experience it, " says beth. " She has even more gumption than I do.

She's not going to let anything get her down. "

On a recent afternoon, Grace sits at the dining room table and cuts

out a paper bird for a first-grade class project.

She uses a walker if she goes to Wal-Mart or the zoo, and recently

replaced her soft braces with hard plastic ones for better support.

Her grandparents urged her to pick a color that would match her legs,

so the supports would be invisible.

Grace chose bright pink braces with purple butterflies.

To learn more about CMT disease, go to the Web site, www.charcot-

marie-tooth.org. To donate money for CMT research in Grace's name, go

to www.charcot-marie-tooth.org/COF/Grace.php.