Arizona Boy, 3, Suffers From Rare, Genetic Disorder That Stunts Growth

PHOENIX – Three-year-old Trey Lane doesn't realize he's different. He doesn't notice he's shorter than others in his preschool class or that most children don't spend their Wednesdays in a hospital bed.

Trey has a rare and unpredictable genetic disorder called mucopolysaccharidosis VI, or MPS VI, a condition that doesn't allow him to grow at a normal rate. Each week, he must undergo a four-hour hospital treatment that costs more than $20,000. For Trey, the disease may result in clouded eyes and coarse facial features and hip surgeries. It could mean bone malformations and heart problems. Trey's growth is already stunted. He hasn't gained a pound or grown an inch in months. Doctors don't expect him to ever get taller than 4 feet 7 inches.

Late last month, Mike and Cami Lane got disheartening news. A urine test revealed the weekly treatments meant to slow the progression of Trey's disease may not be working. Longing for answers, the Lanes headed to Minnesota to see a specialist. They never got an appointment. But the Chandler family has found new reasons to hope, Cami Lane said.

First, the Lanes met a Tempe couple whose 20-year-old son also has MPS VI. The Willis family attended a fundraiser for Trey a day after reading a Republic story about Trey's condition.

The meeting was especially fortuitous because doctors believe there are only 1,100 cases of the disease worldwide.

The Lane and Willis families quickly became close. Cami Lane and Kaylene Willis now talk often, comparing treatments and symptoms.

Willis' son, Taylor, said he hopes to support Trey as the youngster deals with future surgeries and setbacks. Though a bone-marrow transplant relieved Taylor Willis of some symptoms of the disease, he's less than 5 feet tall and has undergone 19 surgeries. In December, the college student will get a cornea transplant.

Taylor Willis said it'd be helpful for Trey to get advice from someone who faces the same unpredictable disease.

Fundraisers and donations have also helped the Lanes. The Cortez High School swim team sponsored a carwash. The moms group at Risen Savior Lutheran Church held a pumpkin sale. A Gilbert neighborhood donated money raised during a garage sale.

Even children have contributed to Trey's medical fund.

One little girl decided she didn't want birthday presents this year, Cami Lane said. Instead, she told those who came to her party to donate money to Trey.

Trey's older brothers, Drake, 8, and Broc, 6, especially enjoyed a recent fundraiser at Basha High School in Chandler.

The event, dubbed "Trey's Takedown Against MPS VI," featured at least 20 professional wrestlers.

Don "Wolf" Yates of "American Gladiators" and Justin Roberts, ring announcer for World Wrestling Entertainment's "SmackDown," signed autographs.

At the end of the final wrestling match, Wolf carried Trey into the ring. His brothers cheered.

Mike Lane, a Tempe police sergeant, and Cami, a Southwest Airlines flight attendant, said the support has buoyed their spirit.

"It's touched us more ways than just raising money for our son," Cami Lane said. "It really makes us feel we are being embraced by the community."

The Lanes will use the money raised to return to Minnesota in late November. This time a specialist has promised a series of tests and appointments. Mike and Cami hope the weeklong visit will provide some answers.

For now, Mike, Cami and Trey will continue to spend their Wednesdays at St. Joseph's Hospital and Medical Center. Until they are sure Trey's hospital treatments aren't working, the Lanes can't bring themselves to stop getting them.

"We've just gotta keep going forward from today, and that's how we live," Cami Lane said.