For more photographs by Matthew Worden, click here.
Eight-year-old Jack Hammers isn’t shy. He’ll tell you that he’s scared of snakes, he doesn’t like blood, and he used to cry when he got a flu shot. He’ll sing you one of the songs he’s written, such as the one about walking in his brother’s footsteps in the sand. He’ll show you the scars on his legs and talk about how he’s mad at God for making him short.
“That’s fine,” his mother, Elizabeth, will tell him. “That’s between you and God.”
But Jack won’t tell you what he prays for. That’s private.
So you wonder: Does he pray he’ll get taller so his feet reach the floor when he’s sitting in class? Or that one day he’ll run the way his brother and sister do? Does he pray he won’t get teased?
Other people were praying for Jack even before he was born. His mother found out while seven months pregnant that he had a medical problem that could kill him in infancy. She had a crib at home and a name picked out. A doctor suggested she consider terminating the pregnancy.
She and Jack’s father, Dave Hammers, said they were going to give him a chance.
When Jack wrestles with his seven-year-old brother, Augie, or steps onto the school bus at Bethesda’s Ashburton Elementary, where he’s in third grade, it’s hard to believe he’s the boy in the stories.
There’s one story his mom tells over and over. She and Dave took Jack to see a pediatric orthopedic surgeon when he was nine months old. Jack was born with a cleft palate; club feet; hearing, vision, and spinal problems; and bowed legs. But his parents didn’t have an official diagnosis of what was wrong. Elizabeth says the surgeon looked at him, took out a medical book, and said her son had camptomelic dysplasia. The rare congenital skeletal disorder, which causes dwarfism, is almost always fatal.
“I don’t operate on kids who are going to expire,” she remembers the doctor saying.
“My son’s not a library book,” she said.
Since then, Jack has had eight orthopedic surgeries and six operations on his ears. Ear tubes allow him to hear.
“I’m not getting another surgery until I’m ten,” he says. “I hate needles.”
At three-foot-six, he’s about the same height as Violet, his four-year-old sister. He’ll probably never be taller than the average eight-year-old.
“My legs are really tiny,” he says. “Tiny with all these scars.”
Jack wants to be a singer, like Bob Dylan or Tom Petty, or an artist or a doctor, like the one he met from Johns Hopkins who’s a “little person.” He says he sent a letter to Hollywood about making a movie with George Lucas—he’ll call it The Mummy of the Lord King—and he’s waiting to hear back. He wants to go to Canada, which he saw on Google Earth.
Nobody has ever told Jack he isn’t supposed to be here. He knows that taking his first steps at age four made people cry. He doesn’t know that when his mother searched online for survivors of his disease, she found only a handful or that his favorite doctor calls him a miracle.
Elizabeth Babendreier had a feeling something was wrong. At 7½ months pregnant, she was so sick every day that she couldn’t keep her prenatal vitamins down. She drove with a paper bag beside her.
This can’t be good, she thought. She worried that the baby might be malnourished or born prematurely. Her midwife kept telling her everything was fine—some women suffer nausea the entire nine months—but her husband, Dave, convinced her to call her obstetrician. She hadn’t had a sonogram since the first trimester.
The doctor examined Elizabeth and sent her for a sonogram. The ultrasound technician was quiet while she measured the baby. Elizabeth thought she saw tears in the woman’s eyes.
“How are things?” Elizabeth asked.
“I’m just here to do measurements,” the technician said.
The obstetrician called Elizabeth the next day and said he needed to see her. He told her the bones in the baby’s legs weren’t as long as they were supposed to be. He said the baby might have Down syndrome—but he also might have something he couldn’t survive.
“We won’t know until we see him,” he said.
The doctor suggested an amniocentesis, a prenatal test that looks for birth defects and chromosomal abnormalities and poses a small risk to a fetus. He also offered to refer her to another physician to discuss the possibility of termination. Elizabeth wasn’t interested.
She called Dave at work from the doctor’s office. “There’s something’s wrong with the baby,” she said.
“What do you mean?” he asked.
“They don’t know what it is.”
“It’ll be okay,” he told her. “Just go to your parents’ house. Go talk to your mom. I’ll get home as soon as I can.”
The youngest of 13 children, Elizabeth had always looked to her mother, Maryann Babendreier, for strength. Maryann—who raised Elizabeth and her siblings in Silver Spring while their father, Charles, was in the Marines—had endured the loss of two babies. She’d had nine children before she got a washing machine. Elizabeth and her dad joked that they’d get to heaven on Maryann’s coattails.
“God’s in control here,” Maryann said when she heard the news. “He’s not going to give you anything you can’t handle.”
“But what if the baby dies?” Elizabeth asked.
There were times during the pregnancy that Elizabeth wondered if she’d made a mistake. At 28, she was the free bird of the family. She’d been dating Dave, a 22-year-old landscaper, for two months and didn’t want to get tied down.
She hadn’t planned on having children. She’d graduated from Good Counsel High School in Wheaton, finished two years at Montgomery College, and taken a job at Behnke Nurseries. Before she found out she was pregnant, she was still going to parties and Bob Dylan concerts.
Now she wanted the baby more than ever.
Jack once asked his parents where they’d spent their honeymoon.
“The delivery room,” they said.
They got married at the Montgomery County courthouse in January 2001, two weeks before Jack was born. They spent $40 on a marriage certificate, didn’t buy rings—they later tattooed each other’s names on their ring fingers—and surprised relatives with the news.
“Someone said to my dad, ‘Are you mad?’ ” Elizabeth recalls. “He goes, ‘Are you kidding? It’s the cheapest wedding I’ve ever had to throw.’ ”
When Elizabeth went into labor on February 4, 2001, four days before her due date, she thought she was having stomach pains. She didn’t know what contractions were supposed to feel like.
“How far apart are the pains?” the doctor asked on the phone.
“About a minute,” Dave said.
“I’ll meet you at the hospital.”
They got to Montgomery General just in time—Elizabeth hadn’t even started pushing when Jack came out and fell into the doctor’s net. Nurses showed Elizabeth her five-pound baby boy, then took him away for tests.
Jack was about six hours old when a nurse came in and said, “You know he’s deaf, right?” Another doctor sat with Elizabeth and Dave and pointed out the baby’s cleft palate, club feet, dimpled legs, and bent femurs.
Elizabeth and Dave hadn’t been around many babies before. They thought Jack looked wonderful.
“Let’s start from the beginning,” Jack says as he opens a photo album on the dining-room table. His family lives in an apartment in Bethesda near Montgomery Mall; kids’ paintings and homework folders adorn the walls. His parents run a family business, Hammers Landscaping, and Jack and Augie play with garden tools on the front patio and pretend they’re landscapers.
“These are pictures from when I was a baby,” Jack says. His legs are crooked in the photos. “That was me at the beach. Naked. That’s my first bath.”
For the first nine months of Jack’s life, Elizabeth and Dave pumped baby formula into his mouth with squeeze bottles made for babies with cleft palates. They had to get him eating, doctors said.
“He’s beautiful,” Elizabeth’s mother told her. “But he doesn’t look like other babies.”
They took him to the pediatrician twice a week for weight checks; the office opened early so he wouldn’t be exposed to sick kids. His rib cage was so small that his lung capacity was restricted—he has mild lung disease—so a respiratory illness would be dangerous. Most babies with camptomelic dysplasia die of respiratory problems; their lungs don’t grow to full size.
Jack saw specialist after specialist. Orthopedists in Philadelphia said they didn’t know what Jack had. A doctor in Iowa simply called it “Jack syndrome.”
As an infant, Jack made noises but didn’t move much. Therapists from Montgomery County’s Infants and Toddlers program came over and taught Elizabeth exercises she could do with him.
“It was sort of the great unknown,” says Elizabeth’s brother Chris. “Six months after Jack was born, we knew it was going to be a long, tough fight.”
Elizabeth and Dave swaddled Jack in a blanket and held him most of the day. Elizabeth liked singing “Twinkle, Twinkle, Little Star” to him.
When Jack was nine months old, a plastic surgeon at Children’s Hospital fixed his cleft palate. “He may not walk, but he’ll talk,” the doctor said.
Without a diagnosis, it was hard for Elizabeth and Dave to decide what to do. A doctor at Children’s suggested amputating part of his feet and giving him prosthetics, but she wouldn’t perform the operation until his parents took Jack to see Dr. John Herzenberg.
Herzenberg, a pediatric orthopedist at Sinai Hospital in Baltimore, treats many children with rare diseases. A rare disease, sometimes called an “orphan disease,” is one that affects fewer than 200,000 people in the United States—about 25 million people in the country have one.
“He took one look at Jack and goes, ‘He has camptomelic dysplasia,’ ” Elizabeth says. “He said, ‘Look at this. Look at the dimple in his legs. Look at the pictures.’ ”
He told Elizabeth that camptomelia means “bent bone.” He said he couldn’t help Jack. The few children he’d seen with camptomelic dysplasia had died in the nursery. He wouldn’t put a child through unnecessary surgery.
Elizabeth asked him what she’d have to do to change his mind. Jack’s legs were so crooked that without surgery he wouldn’t have a stable base to stand on. Even with prosthetics on his feet, he’d probably be confined to a wheelchair. If her son was going to make it, she realized, he had to be mobile.
Herzenberg said Jack would need to see a cardiologist, a pulmonologist, and other specialists. They’d all need to agree that he was strong enough to endure hours of orthopedic surgery. If that happened, the surgeon said, he could straighten her son’s legs.
An angel came to see Elizabeth after her visit with Herzenberg, when she was pregnant with Augie. Jack wasn’t a year old. She was busy tracking down doctors, trying to convince Herzenberg to take Jack as a patient. She was overwhelmed by a pregnancy she wasn’t expecting.
She says the angel was a beautiful young black boy who wore all white. She knows it sounds crazy, she says, but it happened.
She and Dave hadn’t told anyone about the pregnancy. They knew having another baby was risky and weren’t sure how people would react. Elizabeth says a geneticist had told them that the chances of a second child’s having camptomelic dysplasia could be as high as 25 percent; a few obstetricians said they wouldn’t treat Elizabeth through her pregnancy but wouldn’t say why. She and Dave had planned on taking the risk and having more children, but not that soon.
Elizabeth says the angel walked into their apartment one morning and said he needed to speak with her.
“He sang this little rap about Jack,” she says. “He said, ‘You have a beautiful baby, you have a beautiful home, and don’t worry about the baby inside of you—that one’s going to be fine.’ ”
Dave told her she was crazy: “Whatever helps you sleep at night.”
The angel talked about things nobody else knew, Elizabeth says. He handed her a tin of gummy bears and told her to give one to Jack every day. He said she and Dave should listen to the doctor in Baltimore. That’s where Sinai Hospital is.
“He’ll walk one day,” the angel said.
Elizabeth can trace Jack’s journey through the marks on his legs. He got the scars on his ankles when Herzenberg operated on his Achilles tendons so his feet wouldn’t point inward. He was two. By then he’d learned that even though he couldn’t crawl, he could roll. He rolled fast enough to go around a corner and make it through a doorway.
The longer scars on Jack’s legs are from his femur operations and knee reconstruction. The scars on his lower legs are from when Herzenberg used metal plates to straighten his tibias.
“What are those?” he asks, pointing to a scar his mom hasn’t explained.
“That’s the dimple from your syndrome,” she says.
“What’s a syndrome?”
“You know—it’s what you have,” she says. “Those are the dimples. That’s your telltale sign. That’s what makes you so special.”
A doctor told Elizabeth that children take their cues from parents. If she and Dave could behave as if surgery wasn’t a big deal, Jack might pick up on that.
They let him pack his bag before each hospital visit. He’d bring two plastic dinosaurs in a metal lunch box along with crayons and paper. Elizabeth and Dave would share a cot in his hospital room—his longest stay was eight days—and Dave would sit with him all day.
There were presents and balloons when Jack got home from the hospital. They’d pile pillows around Jack on the couch and let him watch movies.
His longest surgeries were when he was three. He’d been born with only 20 percent of his fibulas, the smaller of the calf bones, so Herzenberg mounted a three-ring metal structure on each leg to cut into the bones and make new bone grow. The surgical devices, called external fixators, would gradually realign his legs.
Jack spent three weeks at home on painkillers and months in a wheelchair. Every night, his parents turned a clamp on the outside of the fixators to push his fibulas down a little more. They had to grab the bottom of the fixators, hold his thigh, and stretch his legs so he wouldn’t get tendonitis. He screamed so much that a neighbor complained about the noise.
Elizabeth likes the photo of Jack in his red Old Navy T-shirt and a diaper, standing with his fixators on and holding onto her hands. He has metal rings attached to each leg and pins sticking through his skin—and he’s smiling.
Elizabeth and Dave told Jack they’d never let doctors do anything that wasn’t for the best. “We’re doing this so you can walk,” Elizabeth told him.
Jack had the fixators when he started preschool at Ashburton Elementary in the spring of 2004. His mother made him Bob the Builder fixator covers.
On the first day, Elizabeth wheeled him into school in a stroller, and his teacher, Sally Fasman, carried him to the middle of the room, where the class met for circle time and sang a hello song.
The school’s Preschool Education Program is one of 15 in the county designed for three-to-five-year-olds with special needs. It’s a transition from the home-based Infants and Toddlers Program to kindergarten. When Jack enrolled, midway through the school year, he was half the size of most of his classmates. He had a cubbyhole on the bottom row and a coat hook below everyone else’s.
He hardly said a word. “When the other kids were playing, he spent a lot of time sitting in the corner pulling at his eyebrow, which he does when he’s upset,” says Fasman, whom Jack calls Miss Sally. “It took a lot of encouragement to get him to look at the other children.”
All nine kids in the class had developmental disabilities. “I’m not sure he realized the difference in size,” says Fasman, “but he had those fixators on and he needed to be picked up and carried everywhere.”
When Jack came back to school after summer break, the fixators were off and he was using a walker. He stopped speaking in a whisper.
“It gave a huge boost to his confidence,” says Fasman. “We found out he had a devilish sense of humor.”
The class did lots of activities on the floor—using blocks to build a road, making shapes with Play-Doh—and Jack started making friends.
When Elizabeth brought him in late one morning, she told him to hang up his coat and go to the circle. A boy went over to Jack and walked back to the circle with him.
“Why did you do that?” Fasman asked.
“Because he was all alone,” the boy said.
The school’s physical therapist, Barbara Barr, worked with Jack on learning to walk, helping him strengthen his trunk muscles and gain motion in his knees. She put a toy on a bench so he had to stand to play with it. She put a block on the floor under Jack’s chair to support his feet and a nonskid material on his seat so he wouldn’t slide off.
After his femurs were operated on, Jack spent three months in a lower-body cast and had to miss school, so Fasman went to his house once a week to work with him. She sat with Jack on the floor and used his dinosaurs to teach him counting and concepts such as “big” and “little.”
About three months after the surgeries, he started taking steps with help. He could walk along a table if he held on. One day when he was home with Elizabeth—his sister, Violet, was a baby and his dad and Augie were out—Jack let go of the coffee table in the living room and walked over to his mom.
“I’m so proud of you,” she said. Jack gave her a hug and kept going.
When Jack’s kindergarten and first-grade teacher, Yvette Killian, wanted to teach her students about writing letters, she set up a post office in class and asked them to send notes to one another. Each child had a mailbox.
“Everybody was writing to Jack,” she says. The letters read, “You’re my best friend” or “I love you.” Killian made a rule that Jack couldn’t accept more letters until everyone else had two.
Jack didn’t want to use any special equipment at school. He wore his glasses, but he wanted to sit at his desk without anything below his feet.
“If there was anything he perceived as making him look different, he would quickly find a way around it,” says Killian.
When the kids wrote stories, they asked Jack for help with the pictures because he’s good at drawing. If he wouldn’t share a toy, he was disciplined the way everyone else was.
“There were never excuses, never anything about his disability,” says Killian.
At home, he got time-outs just as Augie did. He’d try to charm his way out of trouble. “Let me explain,” he’d say. “You have to hear this.” For Valentine’s Day last year, he asked his mother to help him send flowers to “Miss Dana,” the school secretary.
Midway through first grade, soon after he learned to read, Jack found out his mom was sick. He’d heard of cancer before—that’s what had killed a cocker spaniel his dad had when he was little. He thought that’s what happened to everybody who got it.
Elizabeth had gone in for a colonoscopy after finding out that her father—who’d battled colon cancer when she was a teenager—carried a genetic mutation that put her and her siblings at high risk. She’d ignored symptoms for nearly a year. The test showed she had colon cancer.
She’d never felt angry about Jack. When other mothers told her what a great job she was doing with him, she’d think, Isn’t this what parents do? Jack, she felt, was a blessing.
Cancer at 35 was harder to accept. She remembered one of her father’s favorite sayings: “Who ever told you life would be fair?”
Elizabeth and Dave told Jack and Augie that there were different types of cancer and this was one that doctors could operate on and get rid of. Jack thought it was cool that his mom got to have surgery, too.
“They’re going to fix my insides,” Elizabeth said, “the way they fixed your legs.”
Jack was four when he learned about death. His 18-year-old cousin, Oak, was stabbed by a teenager outside a party in Germantown. When Elizabeth talks about her nephew’s murder, Jack gets quiet and rubs his eyes. Oak, his Uncle Chris’s son, worked with Jack’s parents and used to come over to play with Jack in the summers.
“It’s okay to get sad,” Elizabeth tells Jack. “But you know what? What sometimes makes me happy is thinking about how happy he is up there. He’s probably snowboarding down Mount Everest.”
She’s told Jack that bad people killed his cousin during a robbery and then went to jail. She’s talked to him about how life isn’t fair.
When Elizabeth thinks about Jack’s future, she says, she always comes back to Oak. Parents are never promised anything, she reminds herself: “I try to live my life more in terms of if this were your last chance, would you take the time to go give your kids a kiss? The little things like that.”
The oldest camptomelic-dysplasia survivor Elizabeth has read about was 17. But she’s convinced that Jack has a mild form of the disorder, something doctors aren’t very familiar with.
“We don’t worry about the length—we worry about how full his life is,” she says. “After my nephew, it’s like, who knows? Nobody knows.”
On Easter Sunday, just before his grandparents arrived for dinner, Jack kicked Augie in the mouth and left his front tooth hanging by a thread. It was an accident. They were fighting on the couch while Elizabeth filled vases in the living room. There’s a rule about fighting: Nobody tells unless someone gets hurt.
“I didn’t mean to kick you in the face,” Jack told Augie after Elizabeth pulled the tooth. A few minutes later, they were rolling on the floor again.
“Boys being boys,” Dave says.
Jack sleeps on the bottom bunk, and Augie sleeps on top. Jack calls his brother his best pal. They stay up playing their hand-held Nintendo DS after their parents say goodnight. They battle with fake swords in a game they call Star Wars.
A doctor told Dave and Elizabeth that having a brother was the best thing that could have happened for Jack—at 15 months apart, Jack and Augie are almost Irish twins.
The boys don’t see each other much during the school day, so Jack writes his brother notes. When Jack was in first grade, Augie went to his classroom every day to meet him for the bus.
Jack made Dr. Herzenberg a drawing for Hanukkah last year. It’s a picture of himself on a stretcher, with an angel above him as Herzenberg operates. He says the angels come to the hospital with him. The note attached reads: “I am so glad that my legs are done. One day I want to work with you. I love you. You’re the best doctor ever.”
Herzenberg can’t make predictions about Jack. Most people with dwarfism are short-statured because of a genetic bone disorder called achondroplasia, which causes short limbs and a large head. Many achondroplasic dwarfs—the genetic condition affects about 1 in 25,000 people—have normal life spans. They don’t have the respiratory concerns that Jack does. There’s little data on kids like Jack.
“You may find the oldest survivor is 17, but there may be more we don’t know about,” says Herzenberg. “Not every child becomes the subject of a medical report. The fact that he’s made it to eight means he’s probably going to do pretty well.”
Herzenberg told Elizabeth that Jack will probably be four-foot-three when he’s fully grown.
“That’s not bad,” she said.
She calls Herzenberg her hero.
Says Herzenberg: “I don’t think he survived because of any doctors—the survival is all from Jack.”
Elizabeth doesn’t mind the word “dwarf,” as some people do. A “dwarf tree” is just a small tree, she says.
When Jack helps Dave cook dinner, he stands on a chair. Elizabeth hopes to have a house one day that has a kitchen countertop Jack can reach. Adults with dwarfism have told her that it gets harder as you get older and don’t have as much energy. Even now, Elizabeth worries about Jack’s struggles to keep up. When they’re going up a long flight of stairs, she’ll tell Jack her stomach hurts so that he’ll hold her hand and think he’s doing her a favor.
Herzenberg is one of a few surgeons in the country performing a technique called limb lengthening—he can take some children with dwarfism and stretch their legs so they’re five feet tall instead of four. Jack isn’t a candidate. “I think you have to be realistic,” says Herzenberg. “You don’t want to subject him to too many difficult or lengthy surgeries. You can live a long and healthy life being short.”
Jack asks his parents why other kids are getting taller and he isn’t. He can’t go on some rides at the Montgomery County fair because he isn’t tall enough.
“He knows his limitations, but he wants to do more,” says Dave, who massages Jack’s feet after school—they get sore when he’s been on them for a while. Dave tells him, “You just have to live day by day.”
Elizabeth once heard Jack groaning in his bedroom and found him pulling his legs, trying to make them longer.
“I don’t know what it will be like when I’m a teenager with these legs,” he says.
He’ll need a set of textbooks at home and another to keep at school so he doesn’t have to carry a heavy stack. He’ll need an adaptive device to help him reach the pedal of a car.
Jack already has dealt with the staring. When Elizabeth took him shopping for a Halloween costume, a woman didn’t see him and knocked him over.
“It’s not my fault,” the woman said. “He’s a midget.”
During an interview at Ledo Pizza in Bethesda—where he orders extra cheese pizza and sprinkles on more—Jack announces that he wishes he had Super Glue so he could put it on his chair and stay there forever. He’s more comfortable with adults than with kids his age.
“Give me an easy-peasy question,” he says.
The tougher ones—asked with his parents’ permission—tend to go unanswered. Talking about being small makes Jack sad. “It hurts my feelings,” he says.
When he’s asked about his mother, he has a different expression. “She almost died,” he’ll say. About a year ago, Elizabeth developed an abdominal infection after cancer surgery and got to the emergency room just in time. She was in and out of the hospital; Jack’s grandparents, David and Pamela Hammers, helped care for him and his siblings.
“She closed her eyes because she was dead,” Jack says. “But then when they figured out what’s wrong with her, she came back to life.”
Jack would rather talk about his favorite ice cream (mint chocolate chip), his secret handshake with Augie, and how he’s always wanted an iPod—he keeps an iTunes playlist on his parents’ computer—and a phone that can text. He’d rather tell silly stories, such as the one about how he’s planning to wake his mom on Mother’s Day by pouring a giant cup of Diet Coke in her bed.
“Wait—let’s talk about Eric,” he says, too excited to stay in his seat. Jack flaps his hands in front of him when he gets excited, something his parents have asked doctors about. He’s passed all his neurological tests; it’s just Jack, they’ve told her. Eric is Jack’s uncle, who works for Dave and Elizabeth’s landscaping company.
“When he was in second grade, he did an Abraham Lincoln play,” Jack says. “He chose to be the guy who shot him. His mom wanted him to be Abraham Lincoln.”
He has math homework to do, so he’s stalling. He’s already talked about his dogs, his cousin Millie, and his babysitter, whom he calls a “really sweet teenager with the most prettiest, prettiest earrings ever.”
When it was time for Barbara Barr to dismiss Jack from physical therapy last spring after working with him for five years, she wasn’t ready. “You need to let go,” a colleague told her. She’d taken him as far as she could.
Now Barr watches from a distance as Jack walks up and down a flight of stairs, sometimes alternating feet—one foot on one step, the other on the next—like the other kids do. She’ll stop herself from saying anything if she notices that Jack’s not looking where he’s going. If he runs into something, she’s realized, he’ll be okay.
One day Barr saw him in class with his shoes untied and bent down to tie them. Jack smiled at his teacher, and his teacher looked at him. “He knows how to tie his shoes,” the teacher said.
As a second-grader, Jack spent part of the day in a mainstream classroom learning about things such as historical figures. He raised his hand in class and got into staring contests with other boys at lunch. He walked out to the bus on his own after school, his blue backpack hanging from his shoulders and nearly touching the ground.
When Elizabeth chaperoned a field trip, she noticed that Jack’s classmates looked out for him. “Wait for Jack,” they’d say. At the end of the school year, Augie told Elizabeth that his brother had a girlfriend. He said she was in Jack’s class. Jack’s face turned red when Elizabeth mentioned it.
In June, Jack went in the big pool without a float for the first time. He swam around like a dolphin, pumping his hips and pelvis.
“I’m so happy, Mommy,” he said, “I’m finally free.”