June 27, 2008 -- When Desi McKenzie's oldest daughter was 3 years old, she bought her a "My Twinn" doll designed to look just like her.
But with her second child, Aubrey, McKenzie could only wish for a doll that had features matching her infant's. Aubrey has Down syndrome.
McKenzie, who lives in Mililani, Hawaii, never found such a doll while Aubrey was a toddler. Though Aubrey is now 10, McKenzie was overjoyed to recently learn that a few doll makers in the United States and Europe are fulfilling her dream.
"I think it's amazing," she says. "It's so exciting."
Aubrey is hearing impaired, so McKenzie says she plans to tell her about the dolls using sign language.
"I will sign to her, 'Guess what? There's going to be a new doll that's the same as you,'" she says.
Donna Moore is CEO of the U.S. company Downi Creations, which manufactures such dolls. Moore, who worked with special education students before a rare eye disease forced her to stop working outside the home, says her search for ways to provide services for the Down syndrome population led her to design the toys.
"I just realized that there was a huge need for these dolls because in our society today, so many people put a high emphasis on perfection," Moore says. "When these children pick up a doll such as a Barbie … they can't see themselves, and they needed something to identify with."
The Down syndrome dolls — which feature physical characteristics including almond-shaped eyes, a small mouth, a slightly protruding tongue and low-set ears — reflect many of the same developmental features brought about by the genetic condition.
So far, the dolls are a hit with many parents of children who have the disorder; since 1996, the company has sold about 2,500. McKenzie says she plans to e-mail Down syndrome groups to tell more parents about the dolls.
"This is just going to mean the world for the entire Down syndrome population — parents and children," she says. "It's a validation in a way."
Designing the Dolls
To create the look of the dolls, Moore says she worked with an artist who drew inspiration from pictures of several different children, including her former student, Timothy Johnson, of Columbia, S.C.
His mother, Cindy, says the dolls are beautiful.
"For us as a family, it was important to see Down syndrome being shown in a positive light," she says.
McKenzie agrees. She says that every day, her daughter's condition is met with fear, ignorance and discrimination.
"It's amazing how many people stare," she says. "Sometimes, it's uncomfortable being in the general population."
But the condition is not as uncommon as many believe. More than 350,000 people in the United States are living with Down syndrome, according to statistics from the National Down Syndrome Society.
In 1983, people with Down syndrome had an average life span of just 25 years because of their increased risks of heart defects, breathing problems and childhood leukemia. Today, many of those conditions are treatable, so the average longevity has jumped to 56.
Moore says that she can count the negative comments she has heard about the dolls on one hand. A few have claimed that she's exploiting the condition for profit, but Moore counters that her business is non-profit, and she has never received a salary.
However, offensive comments posted online referencing "Down Syndrome Friends" — another brand of Down syndrome dolls that recently entered the United States market — forced the company behind the dolls to post a disclaimer on its Web site.
Dr. Steven Parker, associate professor of developmental and behavioral pediatrics at Boston University School of Medicine, says he can't imagine that people would be that insensitive. Though he hadn't previously heard about Down syndrome dolls, he says he often treats children who have cancer; many use dolls to help them cope.
"It's very touching to see a child with an IV who is getting some nasty chemo, clutching a doll who is also bald and getting an IV," Parker says.
"Kids really take a lot of comfort from these dolls. It's wonderful if they can find one that they relate to on an emotional level."
Gina Lozito, a certified child-life specialist at Golisano Children's Hospital in Syracuse, N.Y., uses dolls on a daily basis with her patients in the hematology/oncology unit. She has ones in wheelchairs and with leg braces, so a Down syndrome doll would be just another added to the mix.
"It doesn't matter to them," she says. "I don't believe that the kids pick up a doll because it's their race or has their condition. I don't think it should make a difference what the doll looks like."
Though it may be in their nature to enjoy playing with dolls, children can also learn from such toys, Parker says.
"I think it's great all around," he says. "Certainly for kids with Down syndrome who look like that, but also for kids who are learning to deal with someone who looks different — maybe if they have a Down syndrome kid in their class."
Moore says many of her customers order the dolls to use as tools for learning about the condition; actress Demi Moore bought them for all three of her children. In addition, several colleges and universities have purchased Downi dolls.
Dr. Susan Anderson, director of the Down Syndrome Program at the University of Virginia Children's Hospital, was one of the first people to buy one. She says she uses it to teach pediatric residents about Down syndrome.
"I think this is an acknowledgement that this is an important group of children that we have in our community," she says.
Both Anderson and Parker say that these types of toys could help demystify the condition for the general public.
"I think when we normalize these conditions in toys and on television," Parker says, "we help to incorporate them into the mainstream of the world, even with these differences."
McKenzie says that she hopes the societal integration of people with Down syndrome will come sooner rather than later. But for now, she welcomes these dolls as progress toward acceptance.
"If it has to be an inanimate object to bridge the gap, it's still great," she says. "We'll take it in baby steps."