Maliyah And Kendra Herrin Discuss Inclusion, Impairments, And The Future 18 Years After Their Separation

It’s been a few years since the Make-A-Wish trip to Disney World, where a stranger photographed Kendra and Maliyah Herrin. The visitor was reportedly taken aback by the two strikingly similar girls who only had one leg each.

They still recall the feeling because it was so inconsiderate and cruel.

For the two, who are now 17 years old and seniors in a Utah high school, that man’s act wasn’t an isolated incident. Despite growing up in the spotlight due to their unique birth circumstances, they are essentially normal siblings and teenagers.

Born with their abdomens linked, Kendra and Maliyah Herrin share a pelvis, kidney, and liver, and each of them is in charge of one leg.

They were separated in a 26-hour procedure at Primary Children’s Hospital when they were 4 years old by a team of 6 surgeons and 25 support personnel.

The two have been the focus of numerous news pieces, a short documentary, and their mother’s book since the procedure garnered international notice. They also made multiple appearances on Oprah.

They have been photographed and gazed at too often to count by curious individuals before and after the 2006 operation. They have had to consider inclusiveness, diversity, and how to interact with people who are a little different as a result of the experience. And they’ve come to a really straightforward conclusion.

“Don’t be afraid to talk to someone. Don’t stare at them. Ask them if it’s OK to ask what happened. But be respectful about it,” says Kendra.

Maliyah nods. “Be nice,” she says.

The Herrins, who are soon to become adults, spoke with the Deseret News about independence, inclusivity, and impairments.

Some advice

The Herrin girls claim to know other disabled people who have experienced bullying, such as a different pair of conjoined twins who are harassed since they only have one leg each. Compared to that, their own experience has been comparatively more enjoyable.

They claim that because they grew up in the same neighborhood and attend the same ward of The Church of Jesus Christ of Latter-day Saints, they have a strong network and are not frequently shunned by other teenagers.

According to Maliyah, they form a close-knit group that does almost everything together, including a girl they’ve known since third grade and a more recent acquaintance.

Maliyah speculates that perhaps Utahns are simply more amiable. Kendra believes it helps that they are willing to discuss their life.

Both girls like forthright, inquisitive people.

“Asking is better than staring,” says Maliyah, who sometimes hears parents shush kids who are curious. She’d rather they told their kids to come over and ask their questions.

For as long as they can remember, they have been questioned about their difficulties and the reasons behind each of their one legs, tailoring their responses to the comprehension of the person asking.

They frequently only state that physicians had to rip them apart because they were trapped together with young children. Their parents, Erin and Jake Herrin, gave them this explanation.

They discuss their physical constraints with ease. According to Kendra, Maliyah has stronger muscles than she does.

They move quickly, scooting at home on wheeled stools similar to those seen at doctor’s offices and using walkers at school or other locations.

They swiftly went over some of the highlights from their many operations.

Their mother donated one of her kidneys shortly after they were split up because they knew Maliyah would require a kidney transplant because they shared a kidney that she accessed through their shared liver (divided during separation surgery).

Maliyah received a second kidney transplant in May 2018. By way of a “chain,” in which a family member donates to a match in another family that needs one, who then donates to a match in another family, Dad Jake, who was not a match, contributed one of his kidneys.

Multiple families may be involved in chains. Exactly half of their family, including their twin brothers Austin and Justin, sister Courtney, and nephew Ezra, each have one kidney, the sisters joke.

Maliyah underwent heart surgery, and both daughters underwent lesser procedures to modify titanium rods as they grew, as well as operations to install and eventually replace the rods to straighten their backs.

In order to straighten her leg and make it point more forward, Kendra had surgery to implant a plate in her femur. Later, physicians implanted a larger plate. A lot of the events were unplanned, such as the bridal shower when Maliyah fractured the rod in her back while hopping on one leg.

Rod replacements “are the least of our problem surgeries. Those are easy,” says Kendra, who had an infection that required surgeries and kept her from the first month of her senior year. She still got A’s and B’s, she says proudly.

How many surgeries? “So many,” Kendra sighs while Maliyah nods solemnly.

They say they never ignore a politely stated question.

Kendra offers another piece of advice for both would-be askers and those with disabilities who get asked: “You don’t know their situation, so be kind.”

But photographing? Never!

“You’re normal,” Kendra wants to say. “If I just took a picture of you, would you be OK with it? No, you would not!”

Orange Socks

Firsthand experience is the most powerful tool for discovering your own voice. When a woman at a YouTube convention asked Kendra and Maliyah if they would produce a video about bullying and inclusion for an initiative called Orange Socks, Kendra had been considering sharing their story with schoolchildren for a while. The specifics of that are still being worked out.

“I said, ‘Of course,’” remembers Kendra, who is clearly the more gregarious of the two. During an interview, both girls engage in the conversation and laugh a lot and Maliyah sometimes adds details or fills in gaps, but Kendra does most of the talking. She often speaks in sentences that start with “we.”

“It’s exciting to be asked to officially talk about it,” she says.

They have a Herrin Twins Facebook page, and their upbeat, animated YouTube movies have garnered a lot of views.

One has had over 115,000 views. On camera, Maliyah is energetic despite her shyness in person. She usually waits for someone else to strike up a discussion.

However, they are excited by the prospect of working with Orange Socks to create the film or confronting a sizable group of children.

Additionally, they might collaborate with Stand Up for Kindness, which promotes the anti-bullying theme “from bystander to upstander,” which is occasionally presented at school assemblies. Like those two groups, the Herrins want everyone to be included regardless of differences.

An program called Orange Socks connects people with disabilities and their families to resources and one another.

Gerald Nebeker, a Utah native whose 18-year-old daughter Vanessa has Down syndrome, started it. He founded RISE Services Inc., a nonprofit organization, prior to her birth with the goal of deinstitutionalizing individuals with disabilities.

Today, it offers a variety of services to families of individuals with disabilities, including a platform for them to share their experiences.

“We talk about a diverse society and we think of race, religion and ethnicity, but we rarely include disability,” Nebeker told the Deseret News. “We are much richer the more diverse our society is.”

In honor of an unnamed woman whose body was dumped off a Texas road, he called the project Orange Socks. Until her identity was eventually revealed, she was referred to by her orange socks.

“I was struck that she was discarded, nameless,” Nebeker said. “I thought she was emblematic of people with disabilities that we discard, minimize and don’t employ.”

All he has on are orange socks.

Adulthood’s close

The Herrin twins anticipate growing more independent as adulthood approaches with a mixture of enthusiasm and trepidation.

“Being able to be on our own, just like any teenagers. … No parents!” Kendra exclaims, then speaks more soberly. “But also different because I don’t feel like we are as independent as other teenagers. We have equipment; it’s heavy lifting.”

Although they have always received care at Primary Children’s Hospital, now that they are practically adults, they will probably go to another facility. All of the medical operations, even the unanticipated ones, have taken place at Primary.

Although they have a lot of similarities in appearance, they have varied tastes in everything from cuisine to color—Maliyah has always adored yellow, while Kendra used to prefer purple but now prefers blue.

It’s not only that Kendra dislikes spaghetti, whereas Maliyah enjoys it. They frequently quarrel over where to eat when they go out with friends.

“I think it’s just a sibling thing,” Kendra says with a shrug. “We definitely do the sibling thing where we fight about nothing.”

They’re only now starting to formulate plans, and the future has consistently appeared elusive to them. Kendra has a phlebotomy certification and plans to pursue a career in the industry when she turns 18 in early 2020. She is capable of handling the task because she has had numerous blood draws herself.

Maliyah is still unsure of her goals. To a certain extent, they are both figuring it out.

Kendra is now a driver. This year, she received her license. Everyone chuckles when she admits that other drivers frighten her; this fear is rather common. However, their parents have always encouraged their independence, and that license has further enhanced it.

The girls’ mother said they would have happy, fulfilling lives and make their own decisions when they were four years old and undergoing surgery.

No Herrin has ever questioned it on a voyage together that has been full of obstacles and surprises.