Chandler boy, 3, battles rare genetic disorder - East Valley Tribune: News

Chandler boy, 3, battles rare genetic disorder

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Posted: Friday, September 12, 2008 7:23 pm | Updated: 10:12 pm, Fri Oct 7, 2011.

Michael "Trey" Lane's omnipresent smile, playfulness and seemingly boundless energy belie what's happening inside him. For now.

VIDEO: Trey's family talks about his care

Michael "Trey" Lane's omnipresent smile, playfulness and seemingly boundless energy belie what's happening inside him. For now.

In February, doctors told Cami and Mike Lane of Chandler that 3-year-old Trey, as he is called, has an extremely rare and incurable genetic disorder that will eventually change the scruffy blond-haired, blue-eyed boy's appearance dramatically - and possibly take his life.

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"He doesn't know he's sick," Cami Lane said as Trey kneaded Play-Doh and made it into crocodile shapes with a cookie cutter in the family's home. "Maybe that's why he's doing so well."

Trey has mucopolysaccharidosis VI or Maroteaux-Lamy syndrome, also called MPS VI. The disease occurs when a child has very little - or is missing - an enzyme used to break down a complex string of sugars called glyco-saminoglycans, which are vital building blocks in the structure of the skin, bones and organs. In MPS VI patients, the sugars accumulate into a jellylike solution.

A representative with BioMarin Pharmaceutical of Novato, Calif., said that there are about 75 cases in the United States and 1,100 in developed countries. The company 2 1/2 years ago began manufacturing a drug given to Trey and others with MPS VI. The firm's Web site, www.biomarinpharm.com, shows that children are usually diagnosed between 1 and 5 years old.

Trey's doctor, Kirk Aleck, chief in the division of medical genetics at St. Joseph's Hospital and Medical Center in Phoenix, said he doesn't know of any other MPS VI patients in Arizona.

Cami Lane said that Trey's hands are starting to claw. He's somewhat delayed in speech, has some balance difficulties, trouble getting up a curb, and can't fully extend his arms.

Trey receives weekly 6 1/2-hour infusions of Naglazyme, a drug that helps improve walking and stair-climbing ability and is shown in clinical trials to increase endurance and slow the progression of the disease. He has had 28 of the intravenous treatments. Lane said Trey will receive the chemotherapy-type infusions for the rest of his life. Children with MPS VI typically live to between 11 and 13 years old.

Trey, who says his favorite character is television's Barney, loves to play with his brothers 7 1/2-year-old Drake and 6 1/2-year-old Broc, two dogs, and a small race car in the family's garage.

The day before each weekly infusion, Cami Lane asks Trey if he wants to get his medicine, which he receives through a device in his chest.

"Yes," he said Wednesday, before running back to watch Barney.

Lane, 39, said she thought something might be wrong with Trey at birth. She said he didn't look like her other babies.

"I asked why Trey was so puffy," Lane said. "They said he was full of fluids and they thought it would change. It didn't. I was told he would start elongating. It never happened."

Lane also noticed Trey's ribs and chest were rounded. Then she saw curvature in his back, and wrist bones that stuck out unnaturally.

Trey's father Mike, a Tempe police sergeant, said he still can't believe the boy has the condition, especially when he looks at him and sees "a happy little guy who lights up a room."

Trey, who starts preschool next week, looks and acts like the picture of health.

"Have you seen him with his clothes off?" said Aleck, Trey's doctor. "Look at him then, and look at his rib cage. You see he's different."

Aleck said his associate, Dr. Theresa Grebe, recognized signs of the disease the first time she saw Trey.

"Until you have laboratory proof, you can't be sure," Aleck said. "Laboratory techniques took a while. I don't think the parents wanted to believe it until we got the results."

Cami Lane wasn't ready to accept the diagnosis.

"I looked at pictures of kids who had this on the Web," she said. "They didn't look like him."

Mike Lane said waiting three months to find out if Trey had MPS VI was difficult.

"I'm a factual person," he said. "You have to prove it to me. I'm probably still in denial."

Some of the characteristics associated with MPS VI are a large head, progressively coarse facial features, impaired vision, recurrent ear and sinus infections, impaired hearing, sleep apnea and reduced range of motion in joints.

Aleck said the most positive thing is that the disease doesn't attack the brain or cognitive skills. He said while Trey appears to have an aggressive form of the disease, the treatments seem to be working.

"He's doing very well," Aleck said. "He has had no (adverse) reaction to the medicine. The question is, over the long haul, can we make it so he doesn't get the body changes? Hopefully, he can especially avoid spinal problems."

Each infusion costs nearly $21,000. Cami Lane's insurance from her job as a Southwest Airlines flight attendant covers 90 percent of the cost. After being denied aid from several entities, the National Organization for Rare Disorders recently agreed to pay the remaining 10 percent. Cami Lane's $2 million insurance maximum will be used up in June. A similar benefit on her husband's coverage has two years left. Family and friends have held fundraisers and sponsored a golf tournament earlier this year.

Cami Lane said she and her husband don't want all the money raised to go to Trey's medical fund.

"I've been told that there are at least 250 other children in this country who have MPS VI and haven't been diagnosed," she said. "Maybe some of what we raise can help them and in research for MPS VI."

She said one of the worst moments after Trey's diagnosis was a question from his brother, Drake.

"He said, "Mom, is Trey going to die?' " she said. "That broke my heart."

Drake, whose parents showed him online pictures of older children with the disease, followed that statement with another heartbreaker.

"He said, 'I'm going to give Trey all the kisses I can before he gets ugly and I don't want to kiss him anymore,' " Cami Lane said.

The couple will do everything they can for their youngest son.

"We want to rewrite the book," Cami Lane said. "I don't want to let this be Trey's fate, his destiny. I don't want to accept that this is his story."

To learn more about Tray visit www.ourtreystreasures.blogspot.com

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