Disabled Dolls Help Ease Isolation of Ailing Children

LENEXA, Kan. —  Miles Postlethwait, born with heart, kidney and intestinal defects, wanted a friend who was just like him. So he and his mom, Marty, created one.

That friend, a muslin “buddy” with a plastic tube protruding from its abdomen and a row of scars across its heart, has helped the 9-year-old through more than 30 major surgeries.

Three years since its creation, that single buddy has grown into Shadow Buddies, the Postlethwaits’ year-old company that makes 12 different disease- and disability-specific dolls.

The 12-inch rag dolls have been stitched, fitted for casts, anesthetized, hooked up to chemotherapy lines, given shots and loved by about 12,000 children across the United States.

*

Some buddies have even traveled to the former Soviet republics. In October, Shadow Buddies donated 100 buddies to former Soviet leader Mikhail Gorbachev’s International Trust for Children’s Health Care. Marty Postlethwait, the company president, gave the dolls to Gorbachev and his wife, Raisa, at a National Children’s Cancer Society news conference in St. Louis.

Miles, whose thumbprint is on the left hand of each buddy, designed the prototype when he was 6.

When Marty Postlethwait asked her son how the buddies should look, he said, “We need to put heart eyes on them for love, so that the kids know that they’re loved, and they all should smile so that when the kids look at the buddies, they are happy.”

The name comes from the song “Me and My Shadow.” The buddies are not called dolls, because of the possible stigma for boys, Marty Postlethwait said.

The buddies come in light or dark “skin,” with knotted yarn hair in different colors, and each wears a printed hospital gown.

Under their gowns, they show the unique physical characteristics of their human buddies’ disease or disability.

“Even little kids who have Down’s syndrome and some of the ones that are a little more severely handicapped all say, ‘me, me,’ when they get them and look underneath the gowns,” Marty Postlethwait said.

The buddies were test-marketed for children ages 6 months through 16 years. But comfort has no age, she said.

“I have many requests from adults and people in their 60s and 70s--grandparents who know someone their age that’s going through a form of cancer,” she said. “And they would like a buddy sent to their friend in the hospital or purchase one to give to them.”

The oldest Shadow Buddy owner is an 88-year-old woman who needed a pacemaker and heart valve replacement. She still has her buddy one year after the surgery.

The youngest is newborn Cheyenne Pyle--also the nation’s youngest heart transplant recipient.

Her surgeon, Dr. Richard Perryman of Jackson’s Hospital in Miami, said the buddies help both the children, who are often too young to understand what is happening, and their families.

“There are a lot of intangibles that go on through health issues, a lot of worries,” he said. “It probably is reassuring to be able to have something tangible that is real--almost like a lifeline.”

The Children’s Hospital of Philadelphia designed an educational program using the Day Surgery Buddy.

Chris Brown, director of the hospital’s Child Life department, said the buddies are given to all patients at a preliminary visit to help them understand the procedure. Children can take their buddy into the operating room during surgery, where it sits on the operating table and even wears a little mask.

The buddies have made some patients more cooperative, said Cindy Markland, a child life specialist at Denver Children’s Hospital in Denver.

*

“It reduces some of the stress,” she said. “It’s them getting a little better sense of control. Everything is being done to them, so they feel more in control when they are working on their buddies.”

Marty Postlethwait left her job as an accounting assistant to start Shadow Buddies. Her husband, Eric, had worked as a jeweler until he recently joined the company.

The Postlethwaits sell the dolls wholesale to corporations, who may then distribute the dolls or ask the Postlethwaits to distribute them. They cost about $10 each.

“Retailing would drive up the cost and would take buddies out of the hands of children who would be given the dolls at a hospital through corporate sponsorship,” Marty Postlethwait said.

In her suburban Kansas City office, she keeps a large notebook of letters from parents, children and health-care workers. A letter from a pediatric AIDS foundation in Puerto Rico said that 3-year-old twin girls had received Shadow Buddies in the hospital.

“Both girls died,” the letter said. “But their buddies were with them to the end. They even shared their medicine with them.”