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Charity helps patients tell stories

Organization uses art to honor milestones for children with diseases

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Tim W. Glass | The Daily Wildcat Tim W. Glass / Daily Wildcat 5-year-old Arrianna West strings beads on her strength bracelet during a Beads of Courage event in the lobby of the Diamond Childrens Medical Center on Tuesday, Feb. 7, 2012. West has been a patient of the hospital her entire life as she battles a genetic heart defect, and, accompanied by her mother, will take part in the heart festival this Saturday from 10 a.m. - 3 p.m. in front of the Student Union Memorial Center.

The Diamond Children’s Medical Center has joined Beads of Courage to support patients diagnosed with cancer or other serious illnesses by providing them with colorful beads representing a milestone in their treatment.

Each bead represents a difficult time in the patient’s illness, but also signifies an important step in the treatment process. The beads are meaningful symbols of courage, honor, recognition, and accomplishment in the treatment process, said Jean Baruch, a UA nursing alumna and Beads of Courage founder. It is a way for the patients to show and tell their stories to others in the community, Baruch added.

Lizzy Bell, a 17-year-old, was diagnosed with Diamond Blackfan anemia, a disease in which bone marrow does not make red blood cells, when she was 6 weeks old. Bell lives off donated blood transfusions.

“The hospital has always been a second home for me, but not the greatest home,” Bell said. “I am not a fan of it, but I have made it part of my life.”

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Bell has different beads, each telling a different story. This illness has become second nature, she said, and is a big aspect in her life, but has never allowed her life to revolve around it. Bell said she plans to attend college and study photography.

“Beads of Courage is a special program for me,” she added. “Without the program, it would be hard to live with my illness. The beads help me tell my story to others and provide a visual understanding to people to show how much I have been through.”

The program’s misssion is to provide supportive care for courageous children coping with serious illnesses. Each bead reflects a meaningful acknowledgment of a child’s treatment, Baruch said. The program supports those with chronic illnesses, cancer, hematological disorder, cystic fibrosis and kidney diseases.

Upon enrollment, each child is given the Beads of Courage bead color guide. Their Beads of Courage process begins with each child spelling out their first name with beads. As they go through their treatment, each child is given a colorful bead representing a treatment milestone to add to their collection. Baruch said the program was designed to support and strengthen children and families coping with a serious illness.

Each bead has its own unique story. The black beads signify getting a needle shot, red beads represent transfusion, yellow beads are for overnight stay in a hospital and blue beads represent clinical visits. There are more than 24 different colored beads, each telling a different story in a patient’s life.

Arianna West, 5, was diagnosed with a lifetime chronic condition, DiGeorge Syndrome. The disease is caused by a defect in the patient’s chromosomes, which results in poor body development. The program has been a tremendous help to Arianna, and has made it easier for her to go through with the illness, said her mother, Vanessa West.

It’s a whole family experience and the program provides a way for each family member to deal with such situations, Vanessa West added.

Sabina Sendek, 14, was diagnosed with a cardiac condition, which has resulted in three heart surgeries. Sabina has collected more than 516 beads, each representing a milestone in her treatment.

Sabina will compete in the second annual dance marathon in the Student Recreation Center to honor members in the community with such conditions, and will help raise awareness for those diagnosed with illnesses. Sabina also plans to inform other patients who don’t know about the program, Baruch said.

Robert King, 14, was diagnosed with biliary atresia, which blocks tubes carrying liquid from the liver to the gallbladder. King had a liver transplant at the age of 7 months, and has collected more than 8,000 beads.

The program has been a tremendous help, said Kristen Kidder, Robert’s mother. She added that the program has brought joy to the patients despite the painful treatment that they go through and has provided them with courage.


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