Rhode Island news
A day in the life of Taylor Marcello
In November 1999, Taylor Marcello, a primordial dwarf, was featured in a Providence Journal story. She was 6 years old. From left, her mother, Jennifer, comforts her in their car after a shopping trip and sits with her on the porch of their then-Coventry01:16 PM EST on Monday, January 28, 2008
Earlier this month in study hall at Scituate High School, Taylor’s best friend, Brianna Quattrocchi, also 14, paints her nails. They have known each other since second grade. Journal photos / Kathy Borchers
AT 6:55 a.m., the mini-school bus makes its way down the dirt road off Route 115 leading to Taylor Marcello’s home. It passes the stone wall that marks the entrance to the 7-acre property and pulls up to the orange clapboard house.
Taylor is downstairs, feeding her five guinea pigs celery and apples that she had just chopped, when the bus driver beeps.
She takes the first seat behind the driver. The radio is tuned to Cat Country 98.1, the local country station and Taylor’s favorite. She hums along to a Brad Paisley tune as the bus winds through the largely rural town, passing her old elementary school and her favorite ice cream shop. A causeway takes the bus over the Scituate Reservoir.
Extra
Gallery: More photos of Taylor Marcello
From the archives: Read Kathy Borchers' 1999 story, Taylor in a Tall World
Gallery: Photos from Taylor’s early years
Save for a bus monitor, Taylor’s the only person on the bus, which makes the 9½-mile trek to the high school as the sun begins to break over the horizon.
TAYLOR is a primordial dwarf, which means that from her conception, her body has developed at an extremely slow rate — nearly one-third the normal rate — leaving her physical-development years behind.
First identified in a baby girl born in Italy in 1815, primordial dwarfism is a catchall phase for a rare type of dwarfism. There are only about 100 people living in North America with the condition.
When she was born, Taylor weighed 1 pound, 13 ounces; she had no body fat. At 6, Taylor was 2½ feet tall and weighed 10 pounds. Today, at 14, she stands an inch more than 3 feet high and weighs 17 pounds. Though she gains about 1 pound a year, she is still wearing clothes made for toddlers. She’ll likely grow 2 more inches.
But in every aspect but size, Taylor is a teenager. She’s a high school freshman. She talks about boys with her friends. She does chores around the house, worries about her grades and has her own MySpace page.
Unlike some who inherit this condition, Taylor is of normal intelligence.
“I see her capabilities now and I know she’ll be all right,” says her mother, Jennifer Marcello. “She’s going to drive a car, go to college, fall in love, maybe get married.”
THE BUS DROPS Taylor off where all the school’s special-needs students start their day, at a door at the back of the middle school, which is connected to the high school.
She takes a seat on a plastic chair inside the doorway to wait for Diane Ficocelli, one of the three aides who chaperone Taylor during school hours.
Casey O’Connor greets her as he walks past. Casey, 12, another little person, has a more common form of dwarfism and is taller and heavier than Taylor.
The hallways are just starting to fill with students as Taylor and Ficocelli make their way from the middle school to the high school. Taylor stays close to the wall and Ficocelli takes her other side.
This is one of the few times of the day when Taylor really has to negotiate through a hallway crowd. She leaves her classes five minutes early to beat the crush between periods. Students take care to give Taylor a wide berth; some along the way stop to say hi.
The bustle and noise build as Taylor enters the high school proper. There’s a lot of hallway chatter and clanging of lockers. Students hurry past, carrying winter jackets and duffel bags bigger than Taylor.
She keeps her head forward, her feet moving twice as fast to cover the ground of Ficocelli’s even gait.
TAYOR IS comfortable in her own skin.
She’s even accustomed to the stares of wonder, bewilderment and curiosity that inevitably happen when she’s out in public. But she shies from the media spotlight.
The day before, she cried when she first saw a reporter and photographer at her home. “I don’t want to be different,” she said, burying her head in her hands.
“The reason why they’re here is because you’re special,” her mother consoled.
“I don’t want to be special,” Taylor sobbed in her distinctive high-pitched, nasal voice.
By the next day, she’s engaged, thoughtful and courteous to her interviewer. She’s accepted the media attention for now.
She sees the irony in the task: to capture a snippet of her everyday life. Yet being pursued by a photographer and a reporter (or a film crew of five) is extraordinary.
And the demands to perform are there, and she knows it.
“They ask you to be normal and then they say, ‘but do it this way.’ " She rolls her eyes.
THE JOURNAL featured Taylor in a story in November 1999, when she was just 6 years old.
Back then, Taylor was followed by Journal photographer Kathy Borchers, who reconnected with Taylor and her family for this story.
After the first story was published, Jennifer says that Taylor was asked to go on talk shows — Maury Povitch, Montell Williams and others — but the family declined.
“I think it would have to be more educational if we were to do a talk show,” Jennifer says.
In 2000, ABC’s 20/20 profiled Taylor.
This year, Fox Television came calling, wanting to do a documentary on primordial dwarfs.
Jennifer decided to accept. The film crew spent three months following Taylor and her family during her final year in middle school.
The documentary also followed Hannah Kritzeck, a 12-year-old girl from Minnesota whom Taylor met through a little person network, and Tyler White, a 4-year-old boy from Canada who met Taylor and Hannah for the first time at a convention for little people in Seattle.
The show, My Shocking Story: World’s Smallest Kids, airs on The Learning Channel tonight at 8.
SHE STARTS her day in a small classroom across from the high school cafeteria devoted to special-needs students. The desks and chairs and tables are about the size a middle schooler would expect.
A white, handwritten sign taped to the front marks “Taylor’s Desk.”
She places her green Coach bag (it’s a fake, she confesses) in the desk’s cubbyhole.
She climbs onto the chair and squats, her feet planted firmly on the seat bottom, her knees bent and her elbows leaning on the desk.
She chats up Kayla McKenna, a senior.
Four other students with special needs ranging from attention-deficit disorder to autism file into the classroom.
Taylor is in this classroom because she has a learning disability. She struggles in math; her writing and reading comprehension are just below grade average.
Yet she does so well in her classes, she is an honors student. Teresa Eagan, the school’s special-education chair, says that Taylor has shown enough progress this year that she’ll likely move into a regular high school English class next year.
“Taylor is an extremely hard-working student. She’s very cooperative and works hard to fill in the gaps,” says Eagan. “If I had more students with her motivation level and desire to succeed, it would make my job a lot easier.”
THE BELL FOR first period rings and Taylor boots up one of the four computers in the room. Taylor would normally be in a specially tailored physical education class, but her teacher is out for the week.
So Taylor is working with Ficocelli on a PowerPoint presentation for her social studies class.
She is nervous about giving this presentation, which compares family life in ancient Greece and Egypt. She dreads having to talk in front of her 25 classmates.
“I still get nervous about going in front of people, but that’s why you’ve got the PowerPoint,” assures Ficocelli. “Once you get into your subject you’ll be OK.”
Taylor isn’t so sure. “I’ll probably pass out,” she jokes later.
But she likes high school so much that she says she would stay an extra year, if she could. “It’s a pretty nice school.”
On the outside, people often point and stare, but high school is a haven where there are literally hundreds of people who are used to her presence.
The only stares come from the sixth graders at the start of the school year. They are new to the building, and it takes a while for them to get used to her size.
She takes a full day of classes, and most of the day she is among all of the other freshmen.
For Taylor and her family, it’s important that she has as normal a high school experience as possible.
BRIANNA QUATTROCCHI pulls up a seat next to Taylor as the monitor calls order and the rest of the class straggles in.
It’s 9:45 a.m., the third period of the day, and 15 high school students are in a bright spacious classroom for “Directed Learning,” which is a nice way of saying study hall. And study hall is a nice way of saying “free period.”
Some boys push their desks together and begin talking about the weekend’s big football games. Another boy places his red hoodie on the desk so that it conceals the cell phone on which he’s playing a video game.
Brianna breaks out a small bottle of red nail polish and begins painting Taylor’s tiny fingernails. Brianna, a 14-year-old freshman, is Taylor’s best friend. They’ve known each other since second grade.
The monitor barely looks up from her book as another student, Aimee Young, walks in.
“It’s so funny that you’re getting your nails done,” Aimee says to Taylor. She looks at one of her broken, French tips and frowns. “Mine are wicked bad.”
Aimee, 19, is Taylor’s partner in cooking class. Normally, Aimee would be in another study hall. But, because The Journal is spending the day with Taylor, she’s received permission to pop in.
“I saw you in Wal-Mart yesterday,” Taylor says to Aimee. “I waved but you didn’t say hi. You were with your boyfriend. I think you thought I was a toddler.”
Aimee laughs. “I would’ve said hi! I just didn’t see you.”
Aimee was buying reading glasses, which she produces as evidence. Taylor slips on the black frame glasses.
“Look at how big they are on you! I want to take a picture,” Aimee says gleefully as she snaps a photo with her cell phone. “This is so going on MySpace. I love it.”
Taylor turns her head from side to side, striking mock poses.
“Taylor, you’re moving too much,” says Brianna, who is applying the finishing coat to her nails.
The air in the room quickly fills with the odor of enamel.
WHEN JENNIFER’S first daughter, Shea, now 20, was born, everything went fine.
But Taylor was born six weeks premature and doctors suspected fetal alcohol syndrome because she was the size of a 25-week fetus, with bulging eyes and no cheeks.
Her mother, certain that the doctors had it wrong, took Taylor to other specialists. Only then did she learn her infant’s true condition.
In the years since, the family has traveled the country to meet others like Taylor.
Scientists have also made progress in understanding the rare condition.
Just this month, the journal Science published the findings of German and British geneticists who say they’ve identified the gene mutation that causes primordial dwarfism, the first step in advanced diagnosis.
Still there are many unknowns about the condition. Life expectancy, for example, is a difficult question. The oldest living primordial dwarf is 43, Jennifer says.
“I try not to let her think about that kind of stuff,” she says.
LUNCH IS AT 11 a.m. and Taylor is hungry.
She has an appetite like a hummingbird, her mom says: she needs small, frequent meals or else she gets tired and irritable.
Taylor buys a chocolate milk, tater tots and nachos, chili and cheese.
She meets up with Brianna and they pick a table close to the cafeteria entrance. The other seats at the octagonal table fill up with other girls. After brief formalities, the group breaks into smaller conversations.
The lunchroom crowd doesn’t pay much attention to Taylor, even though she’s not normally in this lunchroom. She usually eats lunch in the special-needs classroom where she started her day.
Taylor’s aide leans against a cooler near the entrance, talking with a lunchroom volunteer.
Taylor prefers that Ficocelli keep her distance during lunch, especially when she’s sharing it with friends.
“She stays away, away, away,” Taylor says.
Twenty minutes later, more hungry students are waiting to get into the cafeteria. Taylor throws away her leftover nachos.
She gives Brianna a good-bye hug. The two make a pinky swear that they’ll hang out the next day after school.
She waits until the cafeteria empties before heading to her next class.
A PICTURE OF Nick Walker is on Taylor’s cell phone screen.
He’s a 16-year-old primordial dwarf from Colorado. Taylor just might have a crush on him, but she’s not telling.
Taylor and Nick met online through the Potentials Foundation, a support network that raises money to send dwarfs to the annual Little People of America Convention or to cover medical treatments.
Being part of the network has allowed Taylor to meet others her age who share her condition, including Hannah Kritzeck, who also is featured in The Learning Channel documentary.
“She’s my best little person friend,” Taylor says.
But it’s Nick’s photo on her cell phone, and her family and friends try to find out why. Taylor just covers her face, turns beet red and giggles.
Over the past summer, Taylor and Nick talked nearly every night on the phone or online, says Jennifer.
They got together at the Little People of America Convention in Seattle, the first convention that Taylor has ever attended.
“They hit it right off,” Jennifer says.
THE LAST CLASS of the day, physical science, is Taylor’s least favorite.
It’s 1:30 p.m. and she’s wiped out. She’s made it to the second-floor classroom where the boys are carrying on — loudly.
Most of her classes are this way: 20 to 30 teens, a bit rowdy and a bit too much for Taylor to handle.
Taylor eases onto a stool at the very back of the room and rests her head on the black laboratory table.
She prefers to keep to herself and doesn’t like raising her hand or being called on in these classes.
Taylor used to be assigned a seat in the front in a desk nearest the white board. Here in the back she seems like an outsider. She’s not hassled, but she’s also not acknowledged.
Her attitude toward this class is a startling change from the comfortable math class she just left. Held in the special-needs classroom, it had fewer students. There, an animated Taylor volunteered answers and asked questions.
The topic in science class is gravity.
Rachel Anderson, the woman teaching the class, passes out a worksheet with the day’s notes and fill-in blanks. She tries to keep order. “I know it’s the end of the day, but come on, guys.”
Taylor bunches up her puffy brown coat and puts it on the table so that she can rest her head on it. She removes her wire frame glasses and closes her eyes.
Another aide, Lisa Leyden, sits next to Taylor and fills in the handout as the class crawls along to the end of the day.
LAST MARCH, Taylor underwent her first major operation. She had spinal surgery to correct a severe curvature of the spine, a common problem for developing primordial dwarfs that, if left untreated, can lead to respiratory and nervous system complications.
Surgeons at the Alfred I. duPont Hospital for Children in Wilmington, Del., which specializes in treatment and research for skeletal dysplasia, or dwarfism, operated on Taylor for more than 13 hours, inserting two titanium rods and removing one rib.
Taylor lost nearly one liter of blood during surgery, and she spent the next three weeks hooked to a ventilator in intensive care. “She was so swollen I didn’t recognize her,” says Jennifer.
Recovering from the surgery took nearly half the year. While she no longer has to wear a brace, Taylor bears a scar the length of her back.
Now she is more flexible and her back will remain stable and straight, her mother says.
ON THE BUS home, Taylor stretches out on the front seat and falls fast asleep.
Twenty minutes later, the bus monitor gently shakes Taylor as the bus approaches her house. She’s recovered her energy now, and makes a quick exit, heading directly to the kitchen. Mom’s home, off from work early, and shoves a plate of leftover lasagna in the microwave.
Most days, Taylor comes home to an empty house. She makes herself a snack — a peanut butter and jelly sandwich, grilled.
Taylor’s dream is to be a chef. She wants to go to culinary school and someday open her own restaurant. Her favorite class is a home economics course called Foods.
Like any other teen, Taylor has chores and gets an allowance. She stands on the kitchen counter, putting dishes from the drying rack into the cupboard. She loads the dishwasher and cleans the toilet, counters and sink in the bathroom. She also makes sure the family’s three dogs are fed.
Jennifer says she’ll teach Taylor how to operate the washer and dryer soon.
“She’s a responsible kid. There isn’t anything she can’t do.”
MILEY CYRUS plays Hannah Montana on the hit Disney Channel show of the same name. She’s a multimillion-dollar recording artist from Tennessee.
She’s also one of Taylor’s friends on MySpace.
Taylor’s 19-year-old stepsister, Brianna Crowley, is standing over Taylor as she pulls up her MySpace profile on the family computer to prove the point.
Brianna is not buying it. “Look up Christina Aguilera. Or Britney Spears. There’s a million of them and they’re not real,” says Brianna.
Taylor refuses to back down. She shares her mother’s feisty Italian temperament.
“Yeah, well there’s a million of them, and this is the real one!” Taylor insists.
“No.”
“Yes!”
Silence.
“It is!”
“All right. I’m not going to say anything.”
Taylor clicks on photos that Miley presumably has posted. A Christmastime family portrait. A candid shot of Miley and her younger sister. The heading on the profile reads: “This is the real Miley Cyrus, and if you don’t believe me then don’t add me as a friend.”
Taylor looks at Brianna to see if she’s now convinced.
“This is the real Miley Cyrus,” she says.
Brianna bites her bottom lip.
Taylor gets the last word. She closes the screen.
If you would like more information about primordial dwarfism or to donate to the Potentials Foundation, visit, www.potentialsfoundation.org/ or e-mail Jennifer Marcello at Jennifer_Marcello@yahoo.com.
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