Almost three years ago, Maddie Price was at a doctor’s appointment for issues with her transplanted heart when a child life specialist at her Florida hospital proposed a new program. She would get a bead for every procedure, hospital visit and medical milestone.
“I was like, ‘Oh, this is kind of kiddish, I don’t want a bunch of beads, it’s not a big deal,'” recalls Maddie, now 16, of Palm Harbor, Florida. But after some encouragement from her dad, she gave it a try.
Much to her surprise, Maddie found it exciting to get a green bead after bloodwork, or a handblown red glass heart following her second heart transplant on June 1 at Johns Hopkins All Children’s Hospital in St. Petersburg. So far, Maddie’s received over 3,000 beads and counting.
“The beads are inspiring, it was kind of a reward for me,” says Maddie, who spent seven months hospitalized this year. “Not just a memory of going to the doctor every day or getting blood work. It’s ‘Oh you overcame this obstacle, and it’s another day doing good.’ ” Adds her mom, Melanie: “She’s embraced it as a very therapeutic part of her journey.”
Maddie’s beads are received through the non-profit Beads of Courage, which had its beginnings in 2003. Jean Gribbon, at the time a pediatric oncology nurse in Arizona, felt a hole existed in meeting the emotional needs of the children she treated.
“Children are seeking something tangible, that they can hold, that they can show others, [that says] ‘This is what I’ve gone through,” says Gribbon, 41, of Tucson. “When you are a nurse, you give kids stickers and that wasn’t enough, because stickers are disposable.”
So as part of her doctoral research in nursing at Phoenix Children’s Hospital, Gribbon came up with the idea for nurses to give kids different kinds of beads to reward them for every medical step as a way to cope with all they’re going through as well as document the story of their illness.
They get a blue bead for every clinic visit; a red bead for blood transfusions; a glow-in-the-dark bead for echocardiograms; a brown bead for hair loss. “You see this child suffering,” Gribbon says, “and you need tools to help them. Beads have always been used as symbols of honor and accomplishment.”
With donations from friends and family, and the help of several societies of beadmakers, in 2005 Gribbon founded Beads of Courage. Now the program has been used in some 240 hospitals in the United States, United Kingdom, New Zealand, Canada and Japan. Donations and sponsorship covers the costs. It’s not uncommon for a child to have over 1,500 beads telling the story of their illness.
“It shows them they can get through a lot,” says Loren Mirsky-Piatkin, a child life specialist at Johns Hopkins All Children’s Hospital, who helped start the program there. “You hear about all these things they have to endure and they can say, ‘This is what I have done’ and it becomes a badge of honor.”
Gribbon estimates about 60,000 children are currently receiving beads through the program. Most are manufactured glass beads, with another 70,000 handmade by glassblowers all over the world.
Maddie has created works of art with her beads, glueing them to canvases she’s then given away. She continues to visit the hospital, sometimes daily, and along with that come more beads.
After Peyton Richardson, 14, had already taken 367 oral chemotherapy pills through a year-and-a-half of treatment for acute lymphoblastic leukemia, Beads of Courage came to the hospital where she receives treatment, Texas Children’s Hospital, in September.
Peyton was eager to sign up and catch up. So she combed through her mother’s meticulously-kept medical records after her diagnosis in January 2015, and told Beads of Courage all about the multitude of chemotherapy, spinal taps, IV’s, hospital stays and shots. Then hundreds of beads arrived at her Sugar Land, Texas home.
“When I was stringing my beads, I was shocked at how long they got,” says Peyton, noting the strand runs over 30 feet long. “It’s hard to understand how much you go through until it’s all laid out in front of your eyes. Beads of Courage is amazing.”
One mother uses the beads to tell her 4-year-old daughter the story of the medical issues she endured as an infant receiving heart surgery at a California hospital. “It’s a reminder without the memory of the tubes and the scars, ” says Joy Gross, 38, of Aurora Colorado, who collected the beads for Gabby while she was hospitalized. “It’s a way to say, ‘Wow, she’s been through a lot.'”
Other parents find the beads a reminder of the child they lost.
At the funeral for her late 5-year-old daughter, Lilly Belle, Christal Kulungian of Hayden, Alabama, draped the 30 strands of beads the little girl had once strung alongside her casket. Lilly Belle died in 2013 after fighting osteopetrosis, a bone disease.
“Our pastor explained that if you have ever seen a soldier with lots of awards, this child is comparable to the top soldiers with all the awards,” says Kulungian. “This is what she earned.”
Now the strands hang from the family’s kitchen window like curtains, as a reminder of Lilly Belle’s bravery as she underwent procedure numerous procedures. “The beads,” says Kulungian, “gave her such joy.”