Kate’s story: Spreading kindness through poetry

Eighteen-year-old Kate has a powerful message – and a request – for anyone who opens her published book of poetry. The back cover reads:

Kate's journey of living with physical differences began at birth. Eighteen years and five surgeries later, she's a published poet, shining a light on the lived experiences of people with disabilities, including her own.

A diagnosis of neurofibromatosis

When Kate was a baby, her mom, Tracy, took her to the pediatrician. One of Kate’s eyes was bigger than the other.

The pediatrician told her: “Not all kids are blessed with symmetry.”

A few months later, Tracy noticed that one of Kate’s legs was curved. And at Kate’s one-year-old visit, her doctor counted 12 light-brown birthmarks (called Café au lait spots). More than six Café au lait spots is a sign of a genetic condition called neurofibromatosis type 1 (NF1), which can cause several different health problems, including bone deformities, learning disabilities and tumors that grow on nerve tissues.

At 18 months, Kate wasn’t walking. Her mom took her to an orthopedic doctor who explained that Kate’s delayed walking was likely also due to NF1.

More evaluation revealed more answers: Kate wasn’t walking because she was missing a bone in her right lower leg. And her eyes looked different because of abnormal bone growth of her skull and around her eye.

A need for several surgeries

Kate needed multiple surgeries to be able to walk – and to prevent blindness.

At age four, doctors amputated Kate’s lower leg and fitted her with a prosthetic leg so she’d be able to walk. Over the course of the next six years, she also underwent four surgeries to rebuild her skull and eye socket.

Kate had her first two craniofacial surgeries at another hospital. But they weren’t successful, possibly because Kate’s bones don’t heal well due to NF1, or because her eyes and brain were still growing.

They turned to the expertise of the plastic and craniofacial surgical team at Children’s Health℠ and Laura Klesse, M.D., Ph.D., Pediatric Hematologist/Oncologist at Children’s Health and Professor at UT Southwestern – one of the few neurofibromatosis (NF) specialists in the country.

“One of the things that makes Children’s Health so unique is that they have an NF clinic with specialists who know exactly what this rare genetic condition is,” says Tracy.

The two teams worked together to develop a plan to treat her NF symptoms and rebuild her skull and eye socket – this time using synthetic material.

“More than her leg amputation, the appearance of her eyes has continued to cause kids to bully her, to call her a ‘zombie’ and run away – or just stare at her, all of which she addresses in her poetry,” says Tracy.

Needing an idea for her Girl Scout Award

The idea for creating a book of poetry came about on a drive home from dinner during her junior year of high school.

Kate needed an idea for her Girl Scout “Gold Award” – a project that demonstrates both leadership and impact in the community.

As they were stopped at a traffic light. Kate blurted out, “I’d really like to write a poetry book. And, ugh, I don’t know what I’m going to do for my gold award.”

Her dad, Joey, responded, “Kate, say that all again – I think there’s an idea in there.”

Kate immediately got it. She’d just uncovered the perfect solution for her Gold Award project: a poetry book featuring poems from people with physical differences or disabilities.

Kate had been taken by poetry since she came across a TikTok page of a girl performing spoken word.

Collecting poems at Camp Amigo

Kate immediately set to work on soliciting poems from other people with physical differences or disabilities. She created several posts and calls for submissions online and strategically posted them. Her posts generated a ton of interest.

She waited for the submissions to pour in. Every day, she checked her Inbox and her social channels – sometimes, 10 times a day. She’d envisioned a book with more than a hundred poems.

“After four weeks, I’d received exactly one poem,” says Kate.

Kate needed help.

Fortunately, Camp Amigo – a camp expressly for kids with facial differences hosted at a facility called Camp John Marc – was only a few weeks away. Kate and her mom thought camp might be a good place to collect more poems.

“Kate has attended Camp Amigo for six years and has gotten so much out of bonding with other kids with facial differences,” says Tracy.

Kate’s counselor at camp, Jessica May, M.D., Plastic and Craniofacial Surgeon at Children’s Health and Associate Professor at UT Southwestern, and two of the attending physician assistants Jessica Grant, PA-C, Plastic Surgery, and Riley Powers, PA-C, Plastic Surgery, were more than happy to assist with organizing a poetry workshop at camp.

Dr. May describes Kate as wise beyond her years and very caring and eloquent. “Kate completely commanded the room during her workshop. Everyone there was so moved by her words and the way she presented,” says Dr. May. “The workshop was so heartwarming, just like the book she created – which we now give out to all our craniofacial patients.”

During the workshop, Kate started with an explanation of poetry and then gave each participant a packet with explanations of different poems (including two of her own) and emphasized that she wanted everyone to write about living with a difference.

Publishing her collection of poems

Over the course of the next few weeks, Kate managed to host another poetry workshop and was able to assemble 82 poems to publish in her book entitled “The World Through Our Perspective: A Collection of Poems From Those With Physical Differences or Disabilities.”

She also worked with an illustrator, Laura M. Gillis, to include beautiful, black and white illustrations.

As Kate states in the introduction: “I considered including photographs of each poet, but I decided against it. While seeing pictures of us might help the reader understand our situations more clearly, seeing us is not the main point of this book. Instead, we want you to hear our voices.”

The book includes poems from anonymous contributors, a 10-year-old from Dallas and a 34-year-old from Ontario, Canada. It also includes a poem from her grandfather, Gary, who broke his back at a young age. He, like Kate, walked with a limp.

“Because of my leg and his back, my grandpa felt really close to me. Every time we visited, he’d give me extra turns riding on his four-wheeler,” says Kate. “My parents said he acted like I was the only person in the room, no matter how big the family gathering. I feel like he saw and understood me on a deeper level than most people.”

Grandpa Gary died in 2017, but Kate and her dad paraphrased the messages he hoped Kate would internalize into the book’s final poem.

The road ahead

Kate’s version of “soaring” includes a goal to write another book – a collection made up entirely of her own poems.

After graduation, she plans to attend college and major in social work, with the goal of working as a mental health therapist for children.

Recently, Kate met with Paymon Sanati-Mehrizy, M.D., Plastic and Craniofacial Surgeon at Children’s Health and Assistant Professor at UT Southwestern along with one of the team’s child psychologists to discuss the risks and benefits of a final surgery aimed at giving better symmetry to her skull and eyes, now that her brain and skull are finished growing.

“Not every disease process has an element of social adjustment, and now at age 18, Kate is facing her launch into adulthood. Our holistic team, which includes specialized plastic surgeons, ENTs, orthodontists, specialized dentists, speech language pathologists, child psychologists and social workers, sees each patient as a whole person. And we’re here to help Kate make the best possible decision for her,” says Dr. Sanati.

Whether or not she chooses to have another surgery, Kate has no doubt she’ll stay committed to pursuing her passion to:

• Increase awareness about what it’s like to live with a physical difference

• Help others feel less alone

• Inspire those with a physical difference to use their difference to become a better person

“I think I’ve had every reason to be bitter. But I’ve never felt the need to. I’ve never seen what being bitter does for you. I’ve just tried to be as nice as possible to everybody,” says Kate.

“My friends sometimes say ‘I’m too nice,’ but I don’t think there is any such thing.”

Learn more

Learn more about our Pediatric Plastic and Craniofacial Surgery Program where we treat more than 10,000 patients a year with craniofacial differences. And learn more about our neurofibromatosis program at the Pauline Allen Gill Center for Cancer and Blood Disorders, which is the largest pediatric neurofibromatosis (NF) program in North Texas – and the only regional program affiliated with the Children’s Tumor Foundation.