By Dennis Box, The Courier-Herald

Looking into Michaela Stevens' bright eyes, it is hard to imagine she has a care in the world. She runs and laughs and plays like any other 8 year old, but there is a difference.

When Michaela was 3, her mother, Jolie Stevens, took her to the doctor for a routine checkup. The doctor noticed something unusual about her neck.

After a series of tests and examinations at Mary Bridge Children's Hospital in Tacoma and Children's Hospital and Regional Medical Center in Seattle, Jolie and her husband Dan, were told their daughter had Morquio Syndrome, also known as MPS-IV, one of the mucopolysaccharide disorders.

It is a genetic disease that causes severe crippling and short stature. Michaela is 38 inches tall and has grown about an inch since she was 3.

"It was devastating," Jolie said. "It's so rare, there was no one to talk to about it. The doctor gave us the diagnosis and sent us home."

Morquio Syndrome is a genetic disease. People with Morquio are lacking an enzyme that breaks down mucopolysacchrides or sugar molecules. The molecules build connective tissues in the body. If the molecules are not broken down, they remain in the cells, stopping growth and causing increasing damage.

The disease is caused by a regressive gene, which both parents must carry.

"It never showed up in our families," Jolie said. "We both had to carry the gene for her to get Morquio. When Michaela was diagnosed she was the only child in the Washington with it. We were told four in 1 million get this disease."

The Stevens have another child, Matthew, a 6-year-old, who is not afflicted with the disease.

Once Jolie realized what her daughter was facing, she went home and began searching for information.

"The doctors had very little to offer," she said. "I went home, got on the Internet and found a support group."

The group she found is morquio.org, a nationwide support group that is trying to raise money for research. The disease is so rare there is very little research money available.

"We are trying to raise money," Jolie said. "But it's awkward here because there is no one to physically help with it. It's all done over the Internet. Our group members are spread all across the country."

Despite the difficulty and sadness of the disease, the enduring life spirit of Michaela has shown the way for both family and friends

"She is very strong willed," Jolie said. "She knows she is small, but she thinks she is cute. We've adapted. There is nothing we can do about it. It's hard watching her come home feeling left out when she can't run and play on the big toys. But things are pretty normal and she has a good attitude."

To alleviate the pain in her legs, knees and ankles, Michaela will undergo surgery in July.

Toni Latawiec was co-leading a Girl Scout Brownie Troop with Jolie when she found out about the surgery.

"We never knew anything about Michaela's disease," Latawiec said. "Jolie is very quiet, so it took awhile before I asked her about the surgery. Once I found out I called the mothers in our group and asked if they would help raise money for Michaela's surgery."

Latawiec, Tonya Tinsley and the other mothers in the Brownie Troop formed a group called the Friends of Michaela. They have scheduled a car wash May 22 at Bonney Lake Auto Parts from 10 a.m. to noon and a rummage/raffle tickets sale on July 10 at the Bonney Lake Supermarket.

The group will be setting donation cans at local business and accepting donations from anyone interested in giving.

"Michaela is such a sweetheart," Latawiec said. "She makes me smile every time I see her."

Dennis Box can be reached dbox@courierherald.com