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Taylor in a Tall World

At 2 1/2 feet tall, she's a little miracle

Story and photos by Journal photographer KATHY BORCHERS
THE PROVIDENCE SUNDAY JOURNAL
Sunday, 11/7/1999

* * *

Taylor Marcello is just like the other 6-year-old girls in her class at Washington Oak Elementary School in Coventry. She likes french fries with ketchup, the singing group 'N Sync, and riding her bike. What makes her different is she's 30 inches tall and weighs 10 pounds. Taylor is a primordial dwarf.

But Taylor has adapted to a taller world. When she wants a jar of peanut butter in the kitchen cupboard, she'll pull out the three drawers below it and climb them like stairs to reach what she wants. And her mother, Jennifer Marcello, 29, recalls how Taylor used to stand on the back of their 120-pound dog to reach the toilet.

"Taylor is very determined to do everything," said Jennifer. "If she can't reach something, she will try every single thing she can think of, even if it takes her a couple of days to come up with something. She's got this incredible determination and she's got a very good sense of space and balance."

Taylor is tiny. She wears size 3-6 months for a shirt and a 6-9 months for pants, a size 1-2 shoes, depending on the style, and until age 3, she wore doll shoes. She weighs 10 pounds, 11 ounces. Clothes usually have to be altered and often they are not age-appropriate for her - they are babyish and have diaper snaps in the legs.

"Taylor's body is so narrow, if you measured her narrowness, it would be scary," said Jennifer. "I used to weigh her every day. I was obsessed with it. And then I got down to once a week, then once a month, now I weigh her once a year, usually on her birthday. Ounces to her are like pounds to us."

Taylor eats small volumes of food, many times a day. She wakes up once or twice a night to eat, says her mom, usually toast and ketchup. "She loves ketchup, everything has ketchup on it. The doctor says she has a metabolism like a hummingbird. And she just burns it off really fast."

When they are out at the store or at the beach, the most common question people ask about Taylor is how old she is. But the questions aren't always that polite.

"Sometimes people are rude. Taylor used to stand in the carriage at the supermarket, and when she was about 2 or 3, she said to me, 'Mommy, why do people always look at me like this?' " - as she looked sideways out of the corner of her eye - "And I say it's because you're so cute."

Jennifer said people always ask, "What's wrong with her?" and she tells them, "Nothing is wrong with her." Because it's so negative. "And then I'll say, 'She understands everything you're saying.' And I'll say it over and over, and then finally I'll lose my tactfulness. But I try really hard. It's just that she understands SO much."

"A better question would be 'Why is she so tiny?' That's a good question."

It's a question that Jennifer herself asked for the first time six years ago.

"July 1, 1993, was the day that changed my life," she said of Taylor's birth day. "My life as I knew it would never be the same again."

TAYLOR WAS BORN four to six weeks premature and weighed one pound, 13 ounces. She had no body fat at all. When Jennifer first saw her in the special care nursery at Women & Infants Hospital in Providence, with all the tubes, wires and monitors, she fainted.

As Jennifer recalled, "Taylor did not look like your average baby. She should have been about five or six pounds, but she was the size of a 25-week fetus. She had no cheeks, she looked almost like a skeleton covered with skin. Her eyes bulged. Her hands were so unbelievably tiny, perfect little fingers, smaller than my older daughter's dolls."

When Jennifer held her daughter in the special care nursery, a nurse practitioner told her Taylor's chromosome tests were normal, but they thought her facial features resembled "a syndrome." The nurse said her chin was small and her upper lip was thin, her eyes narrow." She said these things as I held what I believed to be a perfect little angel with a perfect little face."

The next day, at an appointment with a geneticist, the doctor said Taylor's facial features resembled those of children born with Fetal Alcohol Syndrome. But Jennifer explained she didn't drink at all during the pregnancy. When the doctor said that her job as a bartender gave her "more of an opportunity" to drink, Jennifer was upset. She told the doctor that "being a doctor gave her more of an opportunity to take pills."

Jennifer felt furious driving home that day. And despite her repeated insistence that she did not drink while she was pregnant, for the next three months every medical meeting on why her daughter wasn't growing revolved around Fetal Alcohol Syndrome.

"It was three months of hell for me," said Jennifer.

And every day brought more disappointment because Taylor was still not growing. "When you have a baby it's supposed to be such a happy, joyful experience, and when it's not, it's so devastating. I would leave the hospital each day and get into my car and break."

TAYLOR FINALLY CAME HOME on October 6, three months after she was born. Jennifer had to learn how to thread Taylor's nasal gastric feeding tube into her nose. She broke out in a sweat each time. Jennifer would weigh Taylor every day, but for the first four weeks at home the baby didn't gain any weight.

Seeking more answers, Jennifer called Massachusetts General Hospital in Boston for an appointment. After extensive testing with a geneticist, Fetal Alcohol Syndrome was ruled out. But doctors said she might have a type of dwarfism.

Jennifer ran up a $1,500 phone bill, calling every database that dealt with rare disorders and dwarfism. She learned there are more than 200 types of dwarfism, the most common being Achondroplasia, where the person has disproportionate short stature. But Taylor did not fit this description: Her arms and legs were in proportion to the rest of her body, and she was incredibly tiny.

After more phone calls, Jennifer found out about a place that specializes in growth problems. She called the Alfred I. duPont Institute in Wilmington, Delaware, and made an appointment for February.

"I was scared to death," said Jennifer. "Afraid of what they would tell me." Her biggest fear was that Taylor wouldn't survive. She was so small it was hard to believe she could.

She and Taylor took the train to Delaware. Taylor's dad, Joey Plasse, 35, who owns and operates the auto shop Best Express Lube Plus, stayed home with Taylor's sister Shea, then 6. Mother and daughter met with Dr. Charles I. Scott, chief of medical genetics, and his assistant Linda Nicholson. For the first time, Jennifer said, she felt like she was a valuable part of the appointment. Her confidence increased when Linda Nicholson said to Taylor, "God made you little because you're special."

Dr. Scott explained that primordial dwarfism is very rare. He told her there are barely a handful of children with this type of dwarfism, so there are no studies of this condition, no prognosis. He said that these type of dwarfs are the tiniest in stature. He couldn't predict how big Taylor might get, what her intelligence would be or what her life expectancy would be. And they also didn't know what causes it - it could be a recessive gene from both parents. Or a medical phenomenon, a gift from God.

JENNIFER LEFT DR. SCOTT'S office feeling relieved and happy. At last they knew why her daughter was so small.

"It might sound crazy," she said, "but to Taylor's dad and me, finding out Taylor was a dwarf was the best news anyone could have told us."

She is still angry with her local doctors' diagnosis of FAS, and she thought they should have referred her to the duPont Institute. She said she endured seven months of torture, horrible fears and nightmares of losing Taylor.

This is the reason Jennifer, though she values her daughter's privacy, is sharing her family's story now. She hopes it will help other parents dealing with the medical establishment.

"If you are in a position where your child has problems and you can't find answers, and the doctors are not telling you anything," she says "keep reaching as far as you can."

Jennifer has a box in her cellar stuffed full of information. But she says, "As far as primordial dwarfism, there's not enough literature, there's not enough research. I know, my gut tells me, there are more kids out there, they're just not being diagnosed properly."

She'd like to form a database to help other parents. And she wants Taylor to have more information so she can "realize who she is and feel good about it."

That's not always easy when people around Taylor know so little about her condition.

"There was one time a few years ago I had to leave Jerry's Supermarket, I cried so hard. I left all my groceries and walked away." She said that Shea was pushing the shopping carriage and Taylor was standing up, holding on inside. She heard a woman say, "It's alive!" - the woman was apparently shocked because Taylor started talking, and the woman had assumed she was Shea's doll.

"Well, I turned around, and Taylor was really young at the time, so she didn't understand any of it, but I just walked out of the store and I left everything right there. I didn't know what to do or what to say."

Jennifer said she has learned from Little People of America, a non-profit organization that provides support and information to people of short stature, that children learn how to react from their parents' reaction. So she and Joey have made sure that Taylor is familiar with the idea of dwarfism, and that she's comfortable with the word. "We use it all the time," Jennifer said.

Taylor herself says, "God made me special. That's why God made me little. God makes people different and that's why God made me special and little."

"The only thing I'm asking for," said Jennifer, "is for my daughter to have the same choices as other 6-year-olds."

AT SCHOOL, ONE OF the administrators' concerns was safety. Jennifer says she has had to insist on Taylor's independence.

"It's really hard because Taylor is so rare and no one had to deal with this before," she said. "In some aspects you really can't blame the school system for feeling the way they do. Their biggest thing was safety, safety, safety. But I said to them, 'If you want to talk about safety, Taylor really shouldn't be allowed to take a shower, she's only 10 pounds. She shouldn't be allowed to go to a friend's house, she's only 10 pounds. She shouldn't be allowed to swing on the swings, she shouldn't be allowed to do anything. So when it comes down to safety with Taylor, what it really boils down to is quality of life." Tears formed in Jennifer's eyes.

"And 10 pounds or not, I want her to have the same fulfillment that Shea's had in her life. Because when it comes time for Taylor to do things like trying out for cheerleading, maybe she will. I don't know what's going to happen, but I'll never, ever tell her that she can't. And she knows that, too. And she uses that sometimes!"

Jennifer, who helps out in the office with Joey at Best Express, is pleased with the progress Taylor has made in first grade. "Her teacher, Mrs. Toohey-Kaye, says she's doing well, she's keeping up with her peers. Her teacher is fantastic. She pushes her for independence like I would myself. She knows the right things to say to her when things come up as far as people staring at her. I'm really happy with her."

Just as she fought through a medical maze, she fights for her daughter's rights. Parents need to know the laws, to educate themselves, she said.

"Information isn't always volunteered. You have to find your own resources. And you know your child best, so don't give up. As much as you feel like quitting, don't."

"If you had told me 10 years ago this would be my life, I would never have believed it. Somehow we always manage. I swear there's an angel looking out over us. I'm not super-religious, but I believe He's up there and I've got a lot of faith and more so since Taylor was born. I feel really lucky that God picked me to have Taylor. He chose me for some reason. I don't know why, but He did."

Jennifer said her dreams for Taylor are the same as for Shea.

"I hope that when she gets older, that she can somehow feel lucky that she is who she is. I want both of my girls to be strong people. I don't want them to ever underestimate themselves."

"Taylor talked at 12 months, walked at 18 months, she is a very bright and beautiful child. She learned her alphabet in just one week," said Jennifer.

"People look at her and say, 'That poor baby,' but her dad, sister and I do not feel that way. Taylor can hear, see, feel and think. Most of all she can love. If love could make Taylor grow, she would be six feet tall by now. Never stop believing, because sometimes all you have is hope and faith. Miracles do happen. I know because I live with one."

* * *

There is help out there

If you would like to share information with Jennifer Marcello about dwarfism or other topics, her e-mail address is: Jmarc81950@aol.com

Among the sources of information that Jennifer Marcello found helpful are:

* RI Parent Information Network: Provides information, education, training and support to families of children with disabilities.

175 Main St.

Pawtucket, R.I. 02860

727-4144, ext. 50

* Little People of America: Support and information for people of short stature.

(888) 572-2001

* Early Intervention: Promotes growth and evaluation of infants and toddlers with developmental challenges.

Metro Region: 438-9500;