Kids Health Matters
Topic: Patient Stories

"It was definitely a shock. I almost didn’t believe it at first. I’m a competitive athlete; I’d never really been hurt or sick in my entire life. I didn’t even know what scoliosis was." - Avery Wright

Taylor’s a nationally ranked, competitive barrel racer. To watch her ride is a study of grace in motion. She makes it look effortless. When you stop to consider that she’s doing all of it while dealing with juvenile idiopathic scoliosis (JIS), it becomes even more impressive.

This is not the summer Kyra Condie, 24, was supposed to have. Just a few months from now, Kyra was supposed to be in Tokyo, competing as a climber in the Summer Olympics.It would’ve been the first time climbing was featured as an event in the Olympics and for her, a tremendous personal achievement. A milestone she’s been working towards her whole life.

"I realized, for the first time, that I was shooting straight. Due to my scoliosis, I'd been overcompensating." Erika, a basketball player, gained confidence after surgery to correct her spinal curvature.

Gillette Children's Specialty Healthcare has launched a new resource to help parents of children who have complex, rare or traumatic conditions. The first book released by the new Gillette Children’s Healthcare Press is Spastic Diplegia—Bilateral Cerebral Palsy and it’s written by Lily Collison, an Ireland-based author and the mother of a Gillette patient.

The outbreak of COVID-19 is an unprecedented crisis that has disrupted the lives, schedules and daily routines of millions across the globe. This is a difficult time and we know that our patients and families are going through many transitions simultaneously right now. At Gillette Children’s Specialty Healthcare, our number one goal is keeping you and your family safe. To help during this time, we’ll be offering virtual appointments via video whenever possible and clinically appropriate.  

“It’s just so wonderful to watch these children get better. It’s also very rewarding to see the connection that forms between the children and my dogs. They become friends.”

"Every step Sophia takes is a testament to the countless dedicated individuals who made it possible," says her mother, Susan Slinkard. Sophia and her family traveled from Arkansas to Minnesota for several major surgeries aimed at reducing Sophia's spasticity.

Going sledding is ridiculously fun. It can also be dangerous. Wearing a helmet makes it safer.

As loud music filled the adjoining hallways near the Neurosciences unit at Gillette Children’s Specialty Healthcare, passersby could be forgiven if they were a bit confused. The atmosphere was festive and there was good reason for it. At long last, James Bostic, 17, was able to go home. He had been in the hospital for 15 months.

Owen Nei is 10 years old, an avid hockey and baseball player, and a young man who lights up every room he’s in with his positive, irrepressible attitude. Given how his life started out, the fact that he’s even here, much less doing all of these things, is nothing short of a miracle.

Nicole Leinonen says she’ll never forget the phone call that she says changed her life. “Every time I think of that phone call from Gillette telling me that I qualified for some financial assistance I get emotional. I’m amazed at how generous people are,” Nicole says. “The Gillette Assistance Program (GAP) means I can focus on Ella and her needs. I don’t have to be so stressed worrying about how, as a single parent, I can pay for her care.”

Learn about how Jennifer and her son Nick, a Gillette patient who has cerebral palsy and epilepsy, came up with an idea for a part-time business making dog treats and turned it into a reality that they hope will provide employment opportunities to other young adults who have disabilities.

At Target Field, every Sunday is Kid’s Day and on a beautiful summer day in August, Samuel Anastos scored the first honorary run of a Minnesota Twins game. It was a joyous moment made all the more meaningful because there was a time in Sam’s life when his parents questioned whether he would learn to walk or talk, much less run.

Seven-year-old Maria Renata Sanchez Diaz traveled 1,600 miles from her home in Mexico City to Gillette Children’s Specialty Healthcare as part of her plan to keep a promise to her dad.

There are few moments in life as exciting and anxiety inducing as the day you have your first child, but for Andrew Bailey and his wife, Amanda, things were a bit more complicated. Amanda was home in Connecticut getting ready for her baby shower. Andrew, a pitcher for the Boston Red Sox, was in Seattle for an away game.

Charlie Schultz is a longtime Gillette patient, athlete, and most importantly, a dog lover. Learn how Charlie's love of dogs blossomed (and led to him becoming a dog owner!) during his seven-week inpatient stay to treat his severe spinal curvature, called kyphosis.

The hospital can be a scary place for anyone, especially a child, and no matter how nice the staff is or how thoughtfully the clinical spaces are designed, it’s usually difficult for a patient to forget they’re in one. At Gillette Children’s Specialty Healthcare, that’s no longer the case.

Mason is a happy five-year-old with a contagious smile and a laugh that brings a smile to your face. Diagnosed with cerebral palsy, Mason has attended Gillette for occupational, physical and speech therapies to help him strengthen his muscles and vocal skills. Learn how Mason and his family are showing their gratitude for Gillette this summer!

When Jenna Robinson was born, she only weighed three pounds and doctors told her parents she’d never be a “rocket scientist.” Now 28, she holds a Master’s degree in social work and has dedicated her life to helping individuals lead more independent lives.

Wes Jackson is a thoughtful, kind and inquisitive kid. He also has cerebral palsy, but he won't let that (or anything else for that matter) get in his way. Get to know Wes and his family, you'll be glad you did.

Laney and Lilah are feisty, happy twin sisters. They share a diagnosis of cerebral palsy, but that is just one aspect of their lives. More importantly, they dance, they laugh and occasionally throw things.

Rolling over, crawling. The first words, the first steps, the first bike ride. These actions seem small individually, but many serve as formative moments that represent individual progress. They’re the signs that we’re moving forward and the experiences we remember. However, for many of the patients and families at Gillette Children’s Specialty Healthcare, these milestones are often delayed—if they happen at all.

The day was Christmas Eve, the year was 2003 and the Ketelhohns were resting and watching a movie in their home near Milwaukee, Wisconsin. It was an idyllic evening, but their youngest daughter, 8-month-old, Kate, had a slight fever. It was the type of malady that many children experience throughout their development. There was no reason to worry, until there was.

Cassidy and her mom, Darcy, are two of the biggest fans of the University of Minnesota women's volleyball team. They're excited about the NCAA Division I women's volleyball tournament at Target Center in Minneapolis. While they're disappointed the Gophers will not appear in the NCAA tournament, they're proud of what the team accomplished this season. Cassidy has quadriplegic cerebral palsy and her limited use of her arms and legs means is can be difficult to stand and cheer for her team--until Gillette helped make her dream come true.

The human body is a miraculous makeup of coordinated and interconnected systems that, when operating properly, are a wonder to behold. But when things aren’t operating correctly, this interconnectedness can cause a whole host of complications. This issue is precisely why Gillette’s Aerodigestive Clinic was established last year.

Take a moment and picture your best friend. They may come into our lives at different times, but everyone has one. How we meet them doesn’t really matter. What matters is finding that one person who truly understands you. That person you can be vulnerable with, who shares in your joy and successes, and helps you through life’s challenges.

Hope is many things, including an animal-lover, a peacemaker and a big sister. She's also a longtime Gillette patient, where she receives treatment for multiple pterygium syndrome, a condition she shares with her dad.

It's rare for a singular event to bring so much joy and meaning to so many individuals and organizations, but Gillette Children's Specialty Healthcare's celebration of the 3rd Annual Mauer and Friends Kids Classic, did just that. The event took place on a perfect, June day, and 25 Gillette patients and their families had the experience of a lifetime down on the grass of Target Field.

Every now and again, I write a new letter to my son, Landon. It’s my testament to him. To who he was, to who he is, and to who he could someday be.

After moving from small-town Iowa to the Twin Cities to be nearer to Gillette, Bentley’s parents describe him as a whole new child. He’s talking, reading and thriving in kindergarten, where his classmates exude kindness.

Parents worry. Parents worry about their child’s growth, development, friends, school, future. It’s a universal truth, baked into our biology. When a child is diagnosed with special needs, however, a parent’s worry can snowball into anxiety. That's what happened to me, but here's what I did.

Louie Romero is a smiley kid that simply can’t help the fact that he is irrepressibly charming. It's Louie's personality that makes an impression when you meet him. The fact that he is in a wheelchair and has cerebral palsy ranks much lower on the list.

You know, there might be nothing more Minnesotan than lacing up a pair of skates and heading out to the rink. “You bet, you’d better believe it,” says Tony Lang of Loretto, Minnesota. “I grew up playing hockey my whole life. It’s a family tradition. In fact, when we had kids I built a rink in our backyard.”

Not one to sit on the sidelines, Danny Lilya’s wheelchair and congenital spine diagnosis have never defined him. From playing hockey to scoring field goals on the football team, find out how this athlete and Vikings fan is headed to the Super Bowl this weekend.

Most parents would tell you that having a child changes your life in ways you never could have imagined. That certainly was the case for my husband, Mike and me. Our daughter, Peyton, is now 6 years old, and it’s been a journey of hope, faith and love.

“I don’t think it would surprise anyone to learn that a lot of children love dogs,” says Emily DeBreto. “While we’ve had volunteers bring in therapeutic dogs at the hospital for comfort, we wanted to get our dogs more involved with the actual functional aspects of the therapy we’re providing.”

Even nine years later, George Jamison clearly remembers the moment. He was with his older brother, Jack, at summer camp, having the type of fun that only 8 and 10-year-olds can. Then everything went black. When he awoke, a lot had changed.

As he ambles down a long hospital hallway, smiling with every step and practically daring you to do the same, it can be pretty easy to forget that this wasn't supposed to happen. Mateo Arcos was never supposed to walk.

Your brain isn't like your arm. You can’t see it or touch it. It’s not really tangible, which means that we rarely spend time thinking about the thing that makes us think, unless we have to. This is what those who experience a TBI go through.

Rebecca Pierce, the mother of a Gillette patient, speaks out about the importance of protecting Medicaid for children who have disabilities.

Tall, red-haired and boisterous, it’s not a surprise to learn that Connor plays on the football team back in North Dakota, or that he’s pretty popular.

Born missing her arms, Ruth Evelyn (RE) can do pretty much anything using her feet. But she's always dreamed of riding a bike. So her family turned to Gillette to help make her dream a reality.

“Using a wheelchair is good and bad at the same time. A disadvantage is you can’t run around outside like your friends. An advantage is you can cut the line at Nickelodeon Universe. Chair or not, I’m the same person.” See how care at Gillette has helped Elijah emerge as a leader.

Kelsey's attitude is so affecting, she says that most people don’t notice at first. Kelsey was born with a radial club hand, and her left arm is significantly shorter than her right. This means that when she’s instructing yoga—perhaps the most public of exercises—she’s essentially doing most of it, one-handed.

Katie Allee takes Advanced Placement classes. She’s 15, and she’s a straight-A student. Her mind? It’s all there, and she’ll tell you as much. But when it comes to her body physically, for much of her life, she’s had difficulty.

After a surprising scoliosis diagnosis, Avital Harris wore a back brace for two years. Now she is sharing her story, and plans for the future.

After Jeffrey received an intrathecal baclofen pump at Gillette, his world opened up. He inspired his dad to become a marathon runner and even became an official "marathon maniac" in his own right.

It’s delivery day. You’ve gone through all of the preparations for your newborn—from appointments and ultrasounds, to adding final touches on the nursery—and you are ready to finally meet your child. The last thing you hope for is any unexpected surprises.

Aaron Myers is like any other employee at The Works children’s museum with one exception: he is diagnosed with cerebral palsy. See how Aaron's family laid the groundwork for his successful transition to adulthood—and how the Gillette Transition Clinic is providing additional support.

Joe Carr is updating his Facebook status, taking photos with his iPad, teasing his older sister, and good-naturedly ignoring his mother’s pleas to get ready for his imminent floor hockey game. Meet this busy 13-year-old with an easy smile and a powerful laugh.

"If there is anything that I want people to understand, it’s that parents who have children who have disabilities want what any parent wants for their child."

When 16-month-old Peyton ran across the living room, slipped, and hit his head on the hardwood floor, the impact left him fighting for his life. See how a partnership between Gillette and Regions Hospital helped Peyton achieve a full recovery, and why his parents consider Gillette part of their family.

Ava has a rare condition called multiple hereditary exostosis, which causes boney tumors to grow throughout her body. Learn what the condition means for Ava and why she looks forward to surgeries at Gillette.

Kiara and Keisy are twins who share a diagnosis of muscular dystrophy. Meet these sweet girls and learn how their parents, and Gillette, help them understand they're no different than other kids.

“They almost didn’t notice it at first,” Karey Hall says. When her daughter Katelyn was born, her left leg was missing two toes and had an abnormal, rainbow-like bend to it. “No one at the clinic had ever seen anything quite like it before.”

Mason and his father Rich saw nearly 500 rock bands live in concert last year. They refused to let Mason's cerebral palsy get in the way of reaching their goal.

84-year-old George Fedor is a storyteller. But the one story that George couldn’t tell had to do with one question: What is wrong with the left side of my body?

Joshua, a 10-year-old who has congenital scoliosis, dreamed of one day riding a bike. Learn about the groundbreaking surgery that straightened his severely curved spine, improving his independence and giving him the opportunity for a full childhood.

When Walker's parents and pediatrician became concerned about the shape of his head, their questions led to a diagnosis of craniosynostosis. Learn how a new surgical technique eliminated the need for a blood transfusion during Walker's craniosynostosis surgery.

Small, gregarious, brimming with boundless energy and a mischievous smile, 4-year-old Emmy Veenis is the type of kid people tend to remember. But Emmy started having headaches.

For children like Ava who live in greater Minnesota or outside the state, appointments at Gillette can involve hours of drive time and nights spent in a hotel. All that can add up. Meet Ava and learn how Gillette is helping families like hers by expanding its telemedicine services.

As a child in the 1940s, Lyn Baier traveled with her mother by bus from the family farm in southwestern Minnesota to the old Gillette building near Lake Phalen in St. Paul. She spent months away from home getting treatment for her deformed right leg.

Jackson sustained a spinal cord injury when he was 16 years old. The injury thrust Jackson, who stands a tall 6’2’’, into a new reality of life in a wheelchair. But instead of giving up, Jackson made the decision to embrace his new reality.

Gillette recently hosted a Facebook Live video Q&A featuring John Garcia, MD, sleep medicine specialist, about back-to-school sleep issues. Learn more and watch the discussion.

Avery, a sixth grader who has cerebral palsy, recently had the opportunity to showcase some of her favorite back-to-school fashions to thousands when she modeled for the Mall of America's 2016 Back to School Look Book. Learn how the experience helped build Avery's confidence and how care at Gillette has helped her thrive.

As the Bodell family returned home from an afternoon of bowling, an intoxicated driver plowed into their car. Three-year-old Havana Bodell sustained a spinal cord injury. Less than a year later, the family is speaking out about the dangers of driving under the influence.

For 30 years, Steven Koop, MD, has believed that all of medicine is about "Someone who says, 'Help,' and someone in the other chair to say, 'That's my work. To help you.'"

Colten's family thought he'd come down with the stomach flu. Then his illness became something much more severe. Learn how a Gillette pediatric neurologist and Colten’s rehabilitation team helped him reclaim his childhood.

Born a micro preemie weighing less than one pound, Ava came to Gillette when she began missing milestones. See how far this active 9-year-old has come as a result of treatments informed by gait and motion analysis data.

Darius, who spent the first six years of his life in an orphanage in the city of Vilnius, was born with spastic quadriplegic cerebral palsy. His dad shares their adoption experience, cultural differences and talks about the support they received from Gillette along the way.

"Don't think it won't happen to you," says Ahriana's mom, Cassie Sonnentag. Ahriana sustained serious injuries when a TV fell on her in a terrible accident. See how her family's quick action and care from the Level I Pediatric Trauma Center saved her life.

The Feyereisen family built a sandlot field in their backyard to inspire inclusiveness and teach kindness among their triplet sons, who have varying degrees of disabilities, and their friends. It's come to resemble a real-life "Field of Dreams."

Even after an injury heals, sometimes an imprint of it can remain. How this happens varies from person to person. But for some individuals, like Ali Tokkesdal, it manifests in the form of chronic pain. “I couldn’t walk. It felt like my body had turned against me, like it was haunted,” says Ali.

Maddy’s mom describes her as “a warrior” — and rightly so. Maddy has spina bifida. But she also has much more: extraordinary compassion, a keen sense of humor, and a vibrant personality. Meet Maddy and learn why she’s excited to represent Gillette during the Walk & Roll 3K on June 18, 2016.

When Stacy Soman’s son Hunter started being bullied consistently last year, this question came up more and more. “When your kid starts coming home with bruises, it’s hard not to say: ‘You know what, maybe you should hit back, and they’ll leave you alone.’ Many children would take that advice, but not Hunter."

A Venezuelan mother's prayers are answered as her daughter receives treatment for cerebral palsy at Gillette. “No word is good enough to express our gratitude for helping our daughter have a better quality of life and to overcome the challenges she’s had since birth,” she writes.

Gillette participated in a Twitter chat hosted by ABC's Dr. Richard Besser on rare diseases as part of Rare Diseases Day. Gillette was one of the top chat influencers.