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Denton Record Chronicle DENTON R

Diminutive, but not diminished

PONDER — Don't tell Hannah McCain how cute she is.            

"I hate that," she said. "Most people wouldn't talk to other 11-year-olds that way."

Like most 11-year-old girls, she enjoys sleepovers with her friends. She finds that chatting with teammates between sets can be more fun than the volleyball games themselves.

And like any 11-year-old in the twilight of childhood, she plays with favorite toys less and less. For Hannah, and her older sister, Sarah, 13, that was a pink case full of Polly Pocket dolls with clothes, scooters and other accessories. The sisters spent many hours together sitting in front of a dollhouse playing with their favorite figures. They often gave the dolls different names, the girls said, but the scenario was always the same — a family in everyday life.

Hannah McCain, 11, practices volleyball at the Denton High School gym on June 22, 2011. Hannah and her family will be attending a conference sponsored by the Dwarfs Athletic Association. DRC
Hannah McCain, 11, practices volleyball at the Denton High School gym on June 22, 2011. Hannah and her family will be attending a conference sponsored by the Dwarfs Athletic Association. 
DRC

Hannah's small stature is what prompts unthinking strangers to make the "cute" comment, or to talk around her to another person, or to ask questions like "Just how old are you?"

Except for her dwarfism, "I'm just like they are," Hannah said.

Hannah was born 7 pounds, 7 ounces, and 21 inches long. Before her first birthday, doctors were concerned about her slow growth. For a decade, her parents, Mike and Sheryl McCain, searched for answers — through doctors, endocrinologists, geneticists. Hannah's case was entered into a massive, worldwide database, looking for others who might share her array of symptoms.

Hannah doesn't have achondroplasia, the most common type of dwarfism. There are about 200 types of achondroplasia, which accounts for about 70 percent of the cases, according to the Greenberg Center for Skeletal Dysplasias at Johns Hopkins University.

Since her pituitary gland doesn't put out enough hormones, Hannah's hearing, eyesight and dental growth have also been affected. To help her grow, the doctors have given her growth hormones. Hannah has grown to 3 feet 5 inches, about the average height of a 6-year-old.

The doctors have ruled out a lot of things, such as brittle bone disease or other life-shortening disorders, much to her parents' relief. Her body's tendency to shed calcium also means that childhood illnesses can, and often have, required hospital care. But they have never had a good explanation for the hormone deficiency. They may never get one, Sheryl McCain said.

"They tell us she'll grow into her diagnosis," she said.

For now, her diagnosis is considered a pituitary dwarfism. In the past six months, Hannah hasn't grown much and X-rays show her growth plates are nearly finished. Their best guess for her adult height is about 4 feet, give or take a few inches, her mother said.

The family has begun making changes around the house to encourage Hannah's independence.  One lower-level cupboard in the kitchen is outfitted so she can prepare her own snacks. They put out step stools so that Hannah doesn't have climb on cupboards or fixtures to get what she needs. Her grandfather found a low-slung dresser so she can retrieve her own clothes, but they still need to lower the rod in her closet, Sheryl McCain said.

Watching Hannah cope with daylong blood tests and other procedures has also led them to push back on the doctors in recent years. Hannah tends to sleep through most invasive procedures, Mike McCain said.

"If it isn't going to benefit her, then we don't do it," he said.

While the nearest support group meets quarterly in Dallas, they haven't been able to make a meeting yet. They have decided to travel to Anaheim, Calif., in July to their first Little People of America conference, one that is associated with the Dwarf Athletic Association of America games.

While the trip is expensive, the conference will include information the family needs — even a workshop for siblings, like Sarah. The games give Hannah a chance to play soccer again.

It's been a few years since she's been able to run up and down the field with kids the same size.

By the time she was 9 years old, and the other kids on the team were 7, the game got too fast and too rough, Hannah says.

"Then I always got set as the goalie, and I hated that," Hannah said. "I like to be out on the field."

She's signed up to play volleyball and participate in track and field events at the meet in Anaheim, but she's most looking forward to playing soccer with her peers.

"I get to play like I usually do," Hannah said.

PEGGY HEINKEL-WOLFE can be reached at 940-566-6881. Her e-mail address is pheinkel-wolfe@dentonrc.com.