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Family fills tall order of love, understanding for brothers with dwarfism

Thursday, January 27, 2000

By Gretchen McKay, Post-Gazette Staff Writer

It was a simple request, really, one that in most cases would have entailed a quick trip to the mall. Suzanne and John Graf had taken the family to see "Toy Story 2," and as soon as 4-year-old Will set eyes on Woody, "he leaned over and whispered excitedly, 'I want cowboy boots just like that!' " Suzanne recalls.

Max Graf, left, takes a photo of his brother, Will, at Max's final adoption hearing last January. South Korean-born Max, who turns 4 Saturday, was given up by his birth mother after being diagnosed with achondroplasia. (Matt Freed, Post-Gazette) 

But Will, who was born with achondroplasia, the most common type of dwarfism, has wider, shorter feet than most children as well as disproportionately short legs. As a result, the cowboy boots his parents turned up on their citywide search were either too narrow or climbed well past the preschooler's knees.

Determined, the Grafs finally ended up buying Will a pair of leather work boots, telling him they were "work boots just like real cowboys wear."

"I felt so devious," Suzanne, 34, admits. "But he accepted it, and there really was no other alternative."

And so it goes when you're raising not one, but two little people in a world geared toward the normal-sized American.

In addition to Will and their average-sized daughter Laura, 5, the Grafs two years ago adopted South Korean-born Max, who turns 4 this Saturday. Given up by his birth mother after being diagnosed with achondroplasia, Max languished in a state-run orphanage for nearly two years before the Grafs, who live in Ben Avon, were able to bring him to the States. The family was first profiled in the Post-Gazette a year ago.

As can be expected, life with two dwarf children has been anything but easy, especially since the two boys are only three months apart in age and - like most siblings - have completely different likes and dislikes. Will, for instance, is a natural-born leader, while Max prefers to keep to himself. But it is also extremely satisfying.

"The boys get along so well, it makes me even more happy that we adopted Max," says Suzanne. "And Laura just adores them both."

The couple decided to adopt Max when they saw his picture in a monthly newsletter put out by the Little People of America. Their motive was twofold. Not only would they save a child from the fate of growing up in an orphanage or foster care, but also they would give Will a friend with whom he could relate on a daily basis.

  John Graf and wife Suzanne of Ben Avon take Max and Will to preschool in September. "The boys get along so well, it makes me even more happy that we adopted Max," says Suzanne. (Matt Freed, Post-Gazette)

Though it is one of the most common of more than 100 forms of dwarfism, achondroplasia (which is caused by a gene mutation in early fetal development) is still extremely rare, affecting one child in every 25,000-30,000 births in the United States.

"[Dwarfism] is easy enough to visualize, but day in and day out, it's tough to know what it's like not to be able to hit the light switch or reach the sink without help," says John Graf, 35, a partner with the law firm Tucker, Arensberg, P.C.

"We thought it would be good for both boys to always have someone there who knows the challenges and feel what they feel firsthand."

While it is classified as a disability under the American with Disabilities Act, most "achons" enjoy normal intelligence, a normal life span and relatively good health. That's not to say, though, that there haven't been medical issues for the Grafs over the past four years. Both boys have had several surgeries since birth, as well as a steady stream of CAT scans, MRIs and physical therapy to strengthen their muscles and bones. They also see growth specialists at the Alfred I. duPont Institute in Wilmington, Del., every six months.

In addition to having his tonsils and adenoids removed to ease breathing problems caused by smaller-than-normal nasal passages, Will had a spinal decompression operation at 15 months. He also had a shunt implanted in the back of his head to drain excess fluid on the brain. Hydrocephalus is a frequent complication of dwarfism.

Max, too, had to have spinal decompression surgery shortly after arriving here to give his hourglass-shaped spinal cord more room. He also had to wear a hard-plastic back brace for six months due to kyphosis, a backward curvature of the spine.

Because his ankles bow outward and he, like most dwarfs, is slightly top heavy, Max's biggest daily physical problem is his tendency to fall - a lot.

"He always has a bruise or goose egg," says Suzanne, whether it's because he tripped over his own feet at the mall or fell at Wooden Ladder Pre-School at the Community Presbyterian Church of Ben Avon, which he attends three mornings a week with Will. This past May at a family wedding, Max toppled into one of the columns in the reception hall, leaving a cut above his left eye.

"We spent five hours at AGH getting seven stitches," his mother remembers, shaking her head.

Will's legs, in comparison, are relatively straight, so he falls much less.

Whereas scraped knees and bumped heads are the norm for most preschoolers, even the smallest fall can have serious consequences. Their spinal surgeries have left both boys more prone to injury. Will's shunt, too, is a constant cause for concern. If he gets bumped the wrong way, the tube can become dislodged and require an operation to fix.

Suzanne Graf kisses Max before his first day of preschool. (Matt Freed, Post-Gazette) 

Another daily challenge is finding clothes that not only fit, but also don't look like "baby clothes," as Will puts it. As Suzanne explains, most pants in their size (6-12 months) come with elasticized ankles or snaps - features both boys detest. And they rarely match the size 3 tops they wear, if they can get their heads through the openings, that is.

Shoes are also extremely difficult to find, as are coats. If it fits around their middle, the arms are most likely too long. Alterations make them fit.

Almost as trying is the fact that the family is always running behind schedule.

"Just going to the car takes 10 minutes," Suzanne says, with an exasperated grin. "I'm scared to death all the boys will remember about me when they grow up is that I was always saying 'Hurry up! We're late!' "

Because of their small stature, the boys need a lift for nearly everything: washing their hands, looking out the window, getting a drink from the water fountain at school, getting in and out of the tub. And although they have been potty-trained for more than a year, they still can't go to the bathroom by themselves. Not only are they too tiny to reach a regular toilet, their arms are too short to pull down their pants. The solution: stools and stepladders throughout the house.

Steps, too, provide a tiring workout since their legs are so short. But because the activity helps strengthen their muscles, Suzanne tries to turn a deaf ear to their requests to be carried, even if people are watching.

"I feel so cruel sometimes because people don't understand, but it's really good exercise," she says.

The hardest thing the Grafs have had to grapple with is the stares. Wherever the couple go with the children, be it the mall, a restaurant or playground, both children and adults gawk. Just last week, for instance, on a trip to the McDonald's playroom in Bellevue, the family encountered a pair of gaping teen-agers.

The boys were clueless - they were too delighted that the steps inside the colorful plastic tubes weren't too tall for their tiny legs. But Suzanne couldn't miss the teen-agers' snickering stares and rude comments.

"You could hear them talking, 'Why are their heads so big? Why do they look like that?' " she recalls.

It was much the same on a recent outing to Ross Park Mall to exchange some ill-fitting jackets at Baby Gap. Eyes followed the family as they traveled from store to store, though the stares were usually accompanied by smiles. (Will, after all, was wearing a paper party hat from his birthday three months ago.) A trio of youngsters in The Children's Place couldn't hide their amazement at the sight of two little people trying on mittens and hats. Their mouths hung open in perfect O's.

Suzanne is often tempted to treat those inquiring eyes to a quick explanation of achondroplasia. But most of the time, she lets it go. "I don't know if people really want to hear it."

Similarly, the Grafs refuse to be defensive. "I don't want to let Will and Max think there is something wrong with them."

The children are, however, starting to realize that they are somehow special. A frustrated Max, for instance, wants to know why he falls down so much, and Will has begun to ask why he's smaller than some of his much-younger neighbors.

"He'll say, 'Why is she 2 and bigger than me?' " says Suzanne.

To which she responds: you'll always be little, and that's OK. Still, it breaks her heart when another child calls one of the boys a baby.

Developmentally, dwarfs tend to be a bit behind their peers but usually catch up by the time they're in school. Max, for instance, goes to speech therapy twice a week.

One thing that's helped over the years is the support of the Little People of America. The Western Pennsylvania branch meets every other month to talk about different issues and provide a social outlet for teen-agers and adult little people.

With years of experience to draw on, Suzanne says she worries less than in the beginning.

"I see how beautiful and fun they are, and their personalities are great," she says. "I think they'll both be confident enough."

But the future still poses many unknowns.

Kindergarten in a year and a half, for instance, is a particular concern. Will the boys be able to reach their lockers? Will their legs dangle from the chairs, and will they need help in the bathroom?

Then there's the emotional aspect. Though the Grafs don't anticipate any problems with Will and Max's classmates, how will the older students react?

"Kids are a lot more vocal," says Suzanne. "They want to know why they look different."

Looking younger than their peers makes it particularly hard, she says, recalling a recent trip to an indoor playground.

Each time Will went down the slide, he'd come running over to his mother with a big smile. The last time, however, he looked devastated.

"That girl called me a baby!" he wailed.

"And it just broke my heart," says his mother.

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