By Casey Steiner

The Courier-Herald

Like many 8-year-olds, Chayce Curry loves to sing and dance. The only difference is this blonde-haired, blue eyed, third-grader has a rare disease that affects one in 25,000 girls.

The disease could leave her in a wheel chair the rest of her life if she doesn't undergo a much-needed surgery very soon. The surgery, initially planned for today, has been put on hold by the Department of Social and Health Services and the Washington state Medicaid provider, who are calling the procedure "experimental."

In October of 2003 Chayce was diagnosed with Perthes disease, a rare childhood condition that occurs when the blood flow to the head of the femur (the bone between the knee and hip) ceases and the bone begins to die. The body goes through its natural repair process, but regrows the head of the bone in a deformed state. This deformation creates a non-spherical femoral head inside of a spherical socket and ultimately leads to the body's weight and muscle forces crushing the bone.

Basically, Chayce is in a great deal of pain and her dreams of becoming a professional singer/performer may never come true. As a result of her dying femur, Chayce's left leg is an inch-and-a-half shorter than her right and with time, could become much worse. She was forced to wear an ineffective brace to school for six months and, as a result, received endless teasing from her classmates at Mountain Meadow Elementary School in Buckley.

Chayce's mother Sheila is a 30-year-old single mother of three children, ages 12, eight and one month. The father of her children lives in California and wants nothing to do with his "former family." Sheila has done her best to make ends meet waiting tables at Applebee's restaurant in Federal Way, but hasn't been able to afford health insurance for her family. Last week the Curry's became homeless as Sheila was forced to move out of her rented house in Buckley to afford the trip to Baltimore with Chayce for the procedure.

Without assistance from the state, Sheila will not be able to afford the operation, expected to be about $60,000 for the surgery alone. With a newborn and Chayce to care for during the recovery period, she would not be able to work while in Baltimore. Sheila's family is seeking help to pay for transportation costs, post operation medical costs and living expenses while keeping their fingers crossed the surgery will be covered by the state. A benefit spaghetti dinner and auction is set for Jan. 22 at the Buckley Eagles.

The family would likely stay at the Ronald McDonald House, a charity home provided by McDonald's for families of seriously ill children located 30 minutes away from the hospital. Sheila will have to come up with transportation to and from doctor's appointments for Chayce - not an easy task considering the reclining wheelchair Chayce will be stuck in for transportation purposes for at least four months. A minivan, with special handicapped accommodations, will likely have to be purchased.

Many expenses await the Curry family largely because doctors in Washington haven't been able to help. The state's top doctors in both Tacoma and Bellevue tell Sheila there is nothing they can do for Chayce. Most children, the doctors reason, grow out of Perthes and the disease is so rare not much treatment is available besides rest, the brace which didn't work and range-of-motion exercises.

Unsatisfied with the doctors' answers, Sheila scoured the Internet in search of other families affected by Perthes and has found an "invite only" Web group. She has been directed to Dr. Dror Paley, the director of the Rubin Institute for Advanced Orthopedics at Sinai Hospital in Baltimore. Paley and his colleagues at the Rubin Institute are the nation's only doctors, a few of the only doctors worldwide, who perform the surgery Chayce needs.

The distraction treatment, as the operation is called, was developed by Paley in 1989. Every year more than 300 of the world's top doctors and students travel to Baltimore to study the rarely used, but highly successful procedure. Paley is known as the worldwide leader and top expert on distraction treatment.

In Chayce's case, Paley or Dr. Shawn Standard would attach an external mechanical apparatus known as an external fixator to her femur and pelvic bones by drilling pins through her skin. The distraction, which literally means "pull apart," gently pulls the femur away from the socket to reduce pressure on the head and allows the bone to regrow in its proper shape without bearing any weight. Once the pins are in place, a small screw on Chayce's leg would be turned each day pulling apart the hip socket at a rate of one millimeter per day. The external fixator would be in place four to five months.

The procedure is labeled "experimental" by DSHS and state Medicaid largely because of the unknown. Just more than 50 distraction procedures have ever been performed in the United States - all by doctors at the Rubin Institute. Some doctors disagree the operation is necessary and some label it cruel to the child. However, according to Barbara Shur, the practice manager at the Rubin Institute, Paley has enjoyed a 95 percent success rate in the operations and Chayce, Shur says, is a perfect candidate.

"They call it experimental because the doctors in Tacoma and Bellevue couldn't do or couldn't understand the procedure," Shur said. "They don't understand how Dr. Paley can claim a 95 percent success rate when other doctors refuse to even try the surgery. Distraction is not experimental. Other doctors just haven't been given proper training. Dr. Paley is the best distraction surgeon in the world, has had a huge amount of success and can help Chayce walk again - something her other doctors haven't been able to promise.

"It's only a matter of time before doctors everywhere follow Dr. Paley's lead and perform routine distraction surgeries," Shur said.

Shur said they will know by the end of this week whether the state of Washington will cover the procedure.

"The case has been sent to a committee for review," Shur said. "Dr. Paley and the other doctors are disappointed and are doing what they can to convince the people in Washington the surgery is not experimental and is very necessary."

The best chance of recovery in Perthes sufferers, according to Shur, is in children younger than 6. The longer the operation is put off, the less likely Chayce will enjoy a full recovery. Doctors at the Rubin Institute have been monitoring Chayce's hip closely and believe the surgery needs to be performed within the next few weeks to catch the disease before it progresses too far.

"If we get the financial approval soon Chayce will be able to walk again," Shur said.

Any business or individual interested in donating auction items or money to help Chayce sing and dance her way through life are asked to contact Stacy Nicoletta, Sheila's sister, at 253-862-0578.

Casey Steiner can be reached at csteiner@courierherald.com.