Stephanie Mayhugh with mother Patricia Hughes was made in a location studio in Seattle at the 2007 National Little People of America conference. (Courtesy
Stephanie Mayhugh with mother Patricia Hughes was made in a location studio in Seattle at the 2007 National Little People of America conference. (Courtesy of Gary Parker)

LIVERMORE -- Stephanie Mayhugh was always the smallest person in the room, but those who knew her say her accomplishments were huge.

Mayhugh, 36, died of pneumonia and other complications on May 12 at Kaiser in Oakland. At 31 inches tall, she was one of the very smallest adults on the planet.

"My daughter at 15 months old was bigger than Stephanie was," recalled her brother, Jared Mayhugh. "A lot of people wanted to treat her as a child, but ... she wanted to be perceived as a small person who was an adult."

She was born with primordial dwarfism, a growth disorder that includes at least five conditions, all characterized by proportionate but extremely slow growth, beginning in the womb. Those with the condition often cope with multiple accompanying medical issues and face a shortened life span. Mayhugh, at 36, was among the oldest primordial dwarves.

The condition is exceedingly rare, as are statistics on its prevalence. Estimates range to as few as 100 individuals worldwide.

Born in San Diego, Mayhugh left the hospital at 2 pounds, 14 ounces, recalled her mother, Trish Hughes.

"It was extremely scary," she said. "(The doctors) said she'd never grow or that she'd be a vegetable, but she continued to develop."

The Mayhugh family moved to Livermore after the birth. Hughes and former husband Stephen Mayhugh fought to enroll her at local schools despite her fragility. By the time she entered Livermore High School, she was accustomed to a life of challenge.

"She was the only person I ever knew who could do 20 one-arm pushups," Jared Mayhugh said. "She was very strong. There was a lot she had to do to try and make her life normal."

That included moving about the high school in a wagon loaded with books and a suction machine required to keep her tracheotomy incision clear. It was pulled by aide and friend Gayle Jonas, who met Mayhugh when she was a 9-pound kindergartner. When Mayhugh joined the school marching band, it was Jonas who towed the wagon.

"I think it was one of the best jobs I had in my lifetime," she said.

"Her size wasn't what was important; it was that on the inside, she was just a beautiful child and so comfortable with who she was. She had this enthusiasm -- 'Let's go do it; let's live life.' And her brother and parents are as remarkable as she was. They encouraged her to do whatever she wanted to do."

Mayhugh graduated in 1997, then studied at Las Positas College. By then, however, scoliosis and hip problems made walking difficult, and she began using a motorized scooter.

She threw herself into volunteer and advocacy work, especially with the disabled. She worked with seniors at Livermore's Friendship Center adult day care program, and she worked in the office and taught Sunday school at Cornerstone Fellowship in Livermore.

She was a role model at ValleyCare Health System's respiratory and cardiac care rehabilitation center, where she led exercises.

"People who were moaning and groaning would see her, and say 'If she can do it, I can do it,'" her mother said.

Mayhugh also kept in touch with families with children with primordial dwarfism. As a child, she and her parents appeared on a few TV talk shows to discuss her condition. She attended conventions of Little People of America, where in 1992 she met San Jose photographer Gary Parker.

"I started talking to Steph, and from the moment I met her she charmed my socks off and held me spellbound," he said. "I was so humbled and awestruck at Steph's physical and emotional presence, so taken aback," he said. "I have never met a more captivating human being."

Inspired, Parker went on to create thousands of pro bono photographs of people with all types of dwarfism. He's received grateful feedback from little people and their families worldwide.

"Stephanie was an activist," Parker said. "Not only did she motivate me to show these visuals to the world, but because she came forward, others came forward. They didn't feel they had to stay hidden."

Friends and family describe her as a "person who soaked up love and compassion and gave it back.

"There was no person Stephanie didn't take care of and love," said her father, Stephen Mayhugh. "She touched thousands of hearts.

"She did what she could, and I think that's the biggest message," he said.

CELEBRATION OF LIFE
Friends and family are invited to attend a celebration of life for Livermore resident Stephanie Mayhugh at 4:30 p.m. June 4 at Cornerstone Fellowship, 348 N. Canyons Parkway, Livermore.