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Entries in Dwarfism (6)

Friday
Nov302012

Woman with Dwarfism Undergoes Controversial Lengthening Surgeries

ABC News(NEW YORK) -- Tiffanie DiDonato said everything she has ever wished for has come true: a handsome husband, loving friends and a new baby.  But most of her childhood dreams play out in simple, everyday victories, like taking out the trash or driving.

DiDonato, 32, was born with diastrophic dysplasia, a rare form of dwarfism.  The condition left her with a "typical size" torso, but abnormally short arms and legs.  By the time she was in middle school, she was only three-and-a-half feet tall.

Growing up in Marlborough, Mass., DiDonato fantasized about being tall enough to grab something off the grocery store shelf, cook on the stove, take out the trash and drive a car, but almost everything was out of reach.

But that all changed when DiDonato endured an excruciating and controversial series of limb-lengthening surgeries, which breaks bones and forces them to re-grow longer.  It was a decision she made when she was very young, knowing that it would have risks and rewards with a lifetime of consequences.

At age 8, DiDonato had her first surgery to lengthen her arms and gain four inches of height.

"When I woke up, when it hurt so much, you freeze it, almost like if you scream it is going to hurt worse," she said.  "All you can do is kind of let the tears fall and deal with it and suck it up and let it ride."

When she was 15, DiDonato decided to have the surgery again.  Ignoring the recommended maximum of four inches, she and her doctor decided not to put a cap on her growth.

After her second surgery, DiDonato gained an unprecedented 10 inches of additional height, putting her at 4-foot-10 -- right on the cusp of little-person status.  She kept a journal, which she said helped her get through the painful process.

"I was honest with myself, if I wanted to die, if I felt like that's what I wanted to do, then I wrote it down," she said.

Her journal was turned into a memoir she defiantly titled Dwarf.  In it, DiDonato chronicles her "no pain, no gain" view of life and how surprisingly grateful she is for the experience.

"If you go through a struggle, if you know what sacrifice is, and you have felt a little pain, it makes you that much braver," she said.  "It makes you a little bit more aware."

DiDonato is now married to Eric Gabrielse, a nearly-six-foot-tall Marine, and they recently welcomed a baby boy.

"She's so powerful and strong," Gabrielse said of his wife.  "Being in the military, you need somebody that one, can be independent, but two, can be extremely supportive and because everything she's gone through, she's been through her own battles, so she knows exactly how to support me through mine."

Watch the full story on Nightline Friday at 11:35 p.m. ET.

Copyright 2012 ABC News Radio

Tuesday
Sep042012

With Less Stigma, More Dwarfs Date Average-Size Partners

Courtesy Julie Genovese(NEW YORK) -- Julie Genovese is a little person in a large world that some say can look down on people with dwarfism.

Growing up in New Jersey, Genovese said she endured bullies and stares, and was even submitted to humiliating medical exams that made her feel insignificant and devalued.

And forget about dating.

"In high school, I was pretty much afraid of boys," said Genovese, now 49.  "I had this deep-seated belief that I couldn't be lovable."

She was terrified she would never find happiness.  But Genovese, who is 4-feet 3-inches tall, now enjoys a long and happy marriage with Bill, who is 5-foot-6.  The couple has two average-sized children.

The world of little people has historically held a deep-rooted distrust for taller people -- and rightly so.  Society has relegated dwarfs to circus side-shows and comedy, treating them as if they were subhuman.

But the bias worked both ways.  In the past, many little people frowned on dating averaged-sized people, sometimes fearing that those with sexual fetishes would exploit them.

But now, "attitudes have changed," according to the Little People of America (LPA), an organization that provides support for those with more than 200 forms of dwarfism.

"I'd say about 50-50 are in relationships with average-sized people," said LPA's Leah Smith, vice president of public relations.  "The organization's executive director is married to a taller man."

Just recently, the organization launched a PSA in advance of October's Dwarfism Awareness Month with this message: "We are professionals, we are students, we are advocates," said Smith.  "We are pumping the same blood as everyone else."

In her 2010 memoir, Nothing Short of Joy, Genovese writes about her struggle with crushingly low self-esteem and depression.

"For the first 20 years I felt so cursed and just looked at my dwarfism as an albatross around my neck and had no idea I could change that with my choices and attitude," said Genovese.

But after two pivotal life events -- finding self-help books and a injury that led her to writing a memoir -- she was able to overcome the self-loathing and embrace her life with joy.

And after meeting her husband Bill at a holistic fair where they were both volunteers, Genovese realized she was "worth loving."

"My dwarfism, which I had perceived as a lifelong loss, became the most empowering teacher of my life," she said.  "What a great awakening."

With only 1 in 30,000 Americans born with dwarfism, teens are often isolated when it comes to affairs of the heart.  Genovese said there is a "protective" impulse to date others with dwarfism, whom they meet at conferences.

Copyright 2012 ABC News Radio

Monday
Aug132012

World's Smallest Dwarf Siblings Live Large at College

TLC(SANDOVAL, Ill.) -- Bradley (Brad), 21, and Bridgette (Bri), 23, Jordan are primordial dwarfs and the world's shortest living brother and sister, but they live life large.

Bri weighs 18 lbs. and is only 27 inches tall; Brad is 35 pounds on a 38-inch frame, according to the book of Guiness World Records.

The Sandoval, Ill., siblings are part of a new eight-part television series, Big Tiny that will premier Monday night and will air on subsequent Mondays at 10 p.m. on TLC.

Because of their size, they have special challenges: They ride in car seats, Bri bathes in the kitchen sink and just lifting a bag of sugar off a supermarket shelf is hard work.

But with the help of their family -- mom Christy Jordan and their average-sized sister Brandi -- they not only cope, they succeed.

Bri is the "boss" of the family. She doesn't let having a tracheotomy since she was six months old stop her from baking and enjoying friends.

The pair earned scholarships to attend Kaskaskia Junior College in Centralia, where both were on the cheerleading team.

Diminutive Brad can do multiple flips and is hoisted to the top of the human triangle.

"People don't realize we are actually very athletic," he told ABC News. "Just because we are small doesn't mean we can't do anything."

The siblings were born two years apart with Majewski (microcephalic) osteodysplastic primordial dwarfism Type II, a genetic type of primordial dwarfism. There are more than 200 types of primordial or proportionate dwarfism. In most cases, the short stature is caused by skeletal or endocrine disorders.

According to the Mayo Clinic, dwarfism is generally defined as someone with an adult height of 4 feet, 10 inches or less.

An estimated 100,000 to 500,000 Americans have the disorder, according to the website for primordial dwarfism.

Treatments for most dwarfism-related conditions don't increase stature but may lessen associated physical complications.

Many with dwarfism are diagnosed before birth, but in Bri Jordan's case, doctors did not know she had the disorder until she was 18 months old. Her mother was pregnant with Brad at the time.

Those with dwarfism may encounter discrimination. Most commonly use the terms "dwarfs" or "little people." The word "midget" is now considered derogatory. Many wrongfully assume that those with dwarfism are intellectually impaired and treat them like children.

Maybe their big attitudes helped, but Bri and Brad say they've never experienced bullying in school. Their classmates have always helped them get a leg up on whatever they wanted to do.

But teachers and strangers often "sheltered" them and treated them like children, according to their mother.

Christy Jordan, 44, a registered nurse, has raised her children to believe they can do anything. A single mom, she relies on a large extended family of aunts and uncles and cousins.

"We are from a small community and in general people want to do good," she said. "Brad was a gymnast and the team members helped him through school."

With their sister Brandi, who calls herself the "outcast" for being taller, they go camping and take trips to Las Vegas and help around the house.

"Their older sister helped me when they were little to treat them the same way she got treated," said Christy Jordan. "Then she advocated for them."

Their mother supports their can-do spirit, telling the siblings, "can't doesn't live here."

In the past, dwarfs have often been portrayed in circus sideshows or in comical roles on television and the movies. But today, there are more role models in entertainment. Peter Dinklage, who has dwarfism, is a break-out star on the HBO series, Game of Thrones.

Christy Jordan said she isn't even critical of the entertainment shows that highlight dwarfs in comedic roles [Danny Woodburn of Seinfeld and Verne Troyer of Austin Powers, for example] -- "as long as it is done tastefully and they are not exploited."

"I think society in general for anyone with special needs has changed in a good direction," she said. "They are just like average people trying to live life."

All the Jordans want to accomplish is to, "get the word out" and educate people about dwarfism.

As for the series, Big Tiny, Brad Jordan said he hope it "inspires people." Bri Jordan immediately chimed in, "Yeah, yeah."

He hopes to go on and work in sports or the theater arts. She wants to he a fashion designer and create clothing for little people.

As for their mother, Christy Jordan said it is her youngest children who inspire her.

"When I look back and see how they live life, if I could do half of that, I would be doing great," she said.

To learn more, go to the Potential Foundation, which supports the work of families dealing with dwarfism.

Copyright 2012 ABC News Radio

Thursday
May172012

Girl with Dwarfism Competes on "Toddlers & Tiaras"

Hemera/Thinkstock(NEW YORK) -- She's only eight, but Lacey-Mae Mason is already a beauty pageant veteran.  She competed in her first one when she was 14 months old.

But despite seven years of experience, the little girl from Brooklyn, Conn., faces perhaps her biggest pageant challenge yet in a nationwide competition chronicled on the upcoming season of TLC's show Toddlers & Tiaras.

What sets Lacey-Mae apart from the other little girls on the show is that she has achondroplasia, the most common type of dwarfism.  Although she's about twice as old, she is about as big as a three-and-a-half-year-old, said her mother, Kerry Ann Mason.

But judging from the mantle full of awards and trophies she's already won, her condition hasn't stopped her from wowing judges.

"Her size hasn't been an issue," said her mother.  "People notice there's something different about her, but I'm not sure it plays much of a role."

Toddlers & Tiaras has generated a lot of controversy, with critics accusing mothers of sexualizing their young children and pushing them to pint-sized perfection at any cost.  But Mason said she got Lacey-Mae involved in pageants to teach her daughter that she is beautiful no matter what her physical limitations may be.

"She entered her first pageant because they were handing out trophies just for participating," Mason said.  "I thought it would be great for her self-esteem to tell her one day that the trophy on her mantle was from a beauty pageant."

Child psychologists say the chance for children with disabilities to participate in the same activities as non-disabled children can be beneficial, as long as they are not exploited and actually want to participate.

"Any time you can give a kid a more normal experience, it's a good thing for kids and people in general," said Alan Hilfer, chief psychologist at Maimonides Medical Center in Brooklyn, N.Y.

While not endorsing the idea of child beauty pageants, Hilfer said including people whose appearance may not be considered normal can be a powerful teaching moment.

"This is a chance for this little girl to feel special with the spotlight of positive attention on her," said Fran Walfish, a child and family psychologist in Beverly Hills, Calif. and author of The Self-Aware Parent.  "This could really be helpful to her self-esteem."

But psychologists also said it's important for Lacey-Mae to be the one who really wants to compete.

"If she is feeling pressured to do it and other kids give her a hard time and tease her, it's not going to be good for her mental health," said Nadine Kaslow, professor and vice chair of Emory University's Department of Psychiatry.

Copyright 2012 ABC News Radio

Friday
May042012

Georgia Family Happy to Be 'The Real Life Seven Dwarfs'

Christopher Robbins/Thinkstock(BARNESVILLE, Ga.) -- The Johnston family from Barnesville, Ga., is extreme in many ways. Standing no more than four feet tall, they call themselves "the real life seven dwarfs." They are the largest family of achondroplasia dwarfs, with a type of dwarfism that affects the extremities.

When it comes to parenting, Amber and Trent Johnston go to extremes to keep things extremely normal. They do not modify any of their furniture to accommodate their size. Most parents try to make the world easier for their children. Not the Johnstons; as Amber Johnston told 20/20's Barbara Walters, "we strive to raise our children in the world that's not built for them."

The Johnstons teach their kids to adapt to their environment and use their resources, some of which are a little unconventional. At the grocery store, Amber sometimes lifts a child to reach an item on the top shelf. At home, step stools help them reach sinks and cabinets, and sticks attached to light switches help them turn lights on and off.

Trent Johnston came from a family of dwarfs. His wife's experience was the opposite—her parents and siblings are average size. "I always knew that I was different," she said, "and I was little, but I chose to be positive."

Amber first met other dwarfs as a teen, when she started attending little people's conventions. It was at one such event that she met Trent. After three and a half years of dating, they married. Five months later, Amber was pregnant with their first child.

The Johnstons didn't know if the child would be like them or average size—both were possible. At 31 weeks, they learned the child, a son, would also have achondroplasia dwarfism. They were very happy; they wanted kids who were "like them," they said.

Two years later, Amber Johnston gave birth to a daughter, Elizabeth. It was a grueling, dangerous pregnancy. Amber's hips routinely became dislocated, and at one point Amber, who is 48 inches tall, measured 51 inches around.

The Johnstons dreamed of having a big family, but they knew Amber's body could not tolerate another pregnancy, so they turned to adoption. They wanted a family of people like them, and they knew that dwarfs were often put up for adoption. They also were aware of the terrible treatment dwarfs sometimes received abroad, being deprived of education and other opportunities.

They adopted Ana from Siberia, Alex from South Korea, and, in 2010, Emma from China. Those who know them have joked that they are the "Brad and Angelina of little people"—not only because of their international adoptions, but also because of how much they embrace each child's heritage.

In addition to advocating for little people, the Johnstons are big advocates for adoption. They are quick to point out that they did three overseas adoptions without taking out any loans. They relied on various grants to make it work financially.

One sizable obstacle they face is the stares they get. Jonah, the eldest son, said, "It's frustrating more than sad. I don't think they would want us to stare at them."

When Elizabeth was in third grade, bullies called her a midget. Her answer? "That's how God made me—that's how he loves me."

Supported by faith and family, the Johnstons have realized their dream and are making it work. When asked what they most want people to know about them, Jonah said, "We're no different than other people. It's just our height difference."

Copyright 2012 ABC News Radio

Monday
Mar212011

Kenyan Boys with Rare Disease Face Deportation

Digital Vision/Thinkstock(PORTLAND, Ore.) -- Aamir Khandwalla and his younger brother, Hanzallah, have spent the last eight years being treated for a rare, painful genetic disorder characterized by dwarfism, dislocated hips and knees, curved spines and extremely loose joints.

But they face an uncertain medical future because U.S. immigration authorities say their family must return to their native Kenya by month's end.

Leaving their home in Portland, Oregon, means neither youngster will get specialized care for bone deformities and weakness that make them reliant on motorized wheelchairs at school.  They won't have access to cardiologists versed in the perils of dilated aortas pumping blood through abnormally small chests that can bring early death; or ophthalmologists familiar with childhood glaucoma that could rob them of their sight.

In Kenya, there is no treatment for Desbuquois syndrome, a disorder first described in 1966 by French pediatrician Georges Desbuquois.  Because both boys stand only about 3.5 feet tall and have short necks, flattened facial features and prominent eyes, going back to Kenya, where disabilities and differences aren't tolerated, would subject them to ridicule and social ostracism, their parents contend.

Aamir, 17, a high school junior, already has undergone multiple operations on his legs and spine.  Hanzallah, 12, a sixth grader, only began walking in 2004, after orthopedic specialists at Shriners Hospital for Children in Portland reconstructed his hips.  He complains that his knee frequently gives out, so he's prone to losing his balance and falling.  That's when his parents have to carry him.

The family has few options after receiving a March 1 letter from Anne Arries Corsano, district director for U.S. Citizenship and Immigration Services in Seattle, in which she wrote that "after a thorough review," her office wouldn't extend the Khandwallas' legal stay beyond March 31.

Despite documents attesting to the boys' need for ongoing care from pediatric cardiologists, pediatric orthopedic surgeons, physical therapists, ophthalmologists and a geneticist, immigration authorities apparently don't consider their medical condition urgent or their circumstances extraordinary -- criteria that could allow them to remain in this country longer on a discretionary basis.

"This decision may not be appealed," Corsano wrote.

Their mother, however, said she doesn't intend to budge: "I'm not going to leave, because my son Hanzallah is in need of surgery for his knee and he might need a spine fusion," Faiza Khandwalla, 38, said.

Copyright 2011 ABC News Radio







ABC News Radio