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Carly fulfills dream of having a tea party with Cinderella

Walking, riding a bike, having a tea party with Cinderella -- all seemingly normal everyday activities for most children. But for one special girl, named Carly Moore, these activities are a dream come true.

Linda Moore knew during her pregnancy that there were problems with her daughter Carly's development. Carly had club hands and feet, and the doctors could not see the back of her spine. Carly was born with a rare disease, arthrogryposis, a disorder which limits movement in the body's joints due to weak muscles.

As part of her condition, Carly also developed scoliosis, a curvature of the spine. Carly's spine deformity was so severe that her left lung did not have room to grow inside her rib cage. At just 4 years old, Carly was already experiencing severe respiratory complications.

While watching a medical program, Linda learned of a new medical procedure, VEPTR/titanium rib implant, which involves implanting an expandable rod and vertically attaching it to the upper and lower ribs to provide support and additional space in the chest cavity for the lungs to grow.

Linda, who "just knew in her heart that this procedure was right for Carly," was devastated when she was told by several doctors that Carly was not a good candidate for the procedure. The Moores began to search for new doctors to treat Carly, and selected pediatric orthopedic surgeon, Brian Hasley, MD, with Children's Hospital & Medical Center.  "Carly took to him immediately," recalls Linda.

While fitting Carly for a cast to lessen the effects of the scoliosis, Dr. Hasley and Children's pulmonologist, Mark Wilson, MD, suggested that Carly be evaluated for the titanium rib implant procedure.

Encouraged by the prospect of finding help for Carly's disorder, the Moores traveled to Texas to meet with surgeon, Robert Campbell, MD, who invented the titanium implant procedure. During the evaluation meeting, Carly suffered a life threatening respiratory episode, resulting in a two-week hospitalization. Carly and her family returned to Omaha, exhausted and disappointed, and having never completed the evaluation.

Several months later, Dr. Hasley met with Dr. Campbell at a medical conference and discussed Carly's situation. After reviewing Carly's records, Dr. Campbell determined that Carly would be a good candidate for the titanium rib implant procedure. 

After the decision was made to have the procedure done, the only question that remained was where to have it performed, Omaha or Texas. Although Dr. Hasley had not yet performed the procedure, he assured the Moores that he was willing and able to duplicate the procedure for Carly. They agreed. "I had complete confidence in Dr. Hasley and Children's," says Linda. "Children's had become our second home and the doctors and nurses had become a part of our family."

To prepare for the surgery, Dr. Hasley studied the procedure and travelled to Texas to observe Dr. Campbell perform the surgery. He returned to Omaha where Carly's surgery went very well. In addition to allowing more room in her rib cage for lung development, Dr. Hasley says, "the biggest success of the surgery is that Carly started walking." 

While growing, Carly will require surgery every six months to adjust the implants to accommodate her growing body. When Carly has finished growing, her spine will be fused.

Dr. Hasley says the procedure is "very promising" for children with specific skeletal issues.  It's been two years since the initial surgery was performed, and for Carly, it's enabled her most precious dream to come true: to walk on her own.  Last year, her family celebrated this momentous feat by fulfilling the second part of her dream: the family made a trip to Disney World where Carly got to meet Cinderella and tell her in person, "I can walk."

Today, Carly is in the process of learning to ride a bike. Linda says she is very hopeful for Carly and grateful for the support of the doctors and nurses at Children's. Linda calls Carly her "miracle child" and is so happy that Carly's story can "help other families, take off some of the worry and give them hope for their child."