Kids Health Matters
Topic: My Gillette Story

"Grady’s so much more than his condition. The way we see it is that God gave us this incredibly cool kid who’s had to deal with a few things. We've had challenges, but life is good even when stuff is hard. Either way, because of Gillette and the care they provide, Grady's future will be whatever he decides it to be. That’s no small thing.”

At Target Field, every Sunday is Kid’s Day and on a beautiful summer day in August of 2019, 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.

Toren Theiss is 11 years old. He’s an incredibly active young man who plays soccer, ski races and though he wouldn’t brag about it, does quite well at both. It wasn’t until a day in August two years ago when he was walking towards his mother Jill, that she realized something was wrong.

Speak Now for Kids Week is a public platform for citizen advocates to learn, get involved and influence the outcomes of current child health policies. This year, three Gillette families met with representatives from the Minnesota Congressional Delegation to advocate for kids and Children's Hospitals.

With her shock of blonde hair blowing in the wind, Mari laughs while flying down the trails on her mountain bike and has aspirations to conquer the monkey bars at her local playground. These athletic feats become all the more impressive when you consider the fact that Mari was born missing nearly all of the fingers on her right hand.

The Centers for Disease Control and Prevention (CDC) is warning parents and medical professionals that 2020 will be another peak year for cases of acute flaccid myelitis (AFM) a rare, polio-like neurological condition that affects mostly children. Gillette Children's Specialty Healthcare is ready to be an important center for AFM care and rehabilitation when the outbreak is set to peak this fall.

When I work with my patients at Gillette, I try not to impose my story and my “why” on them and their families. But inevitably, it comes up. My younger brother, Peter has cerebral palsy. He’s why I do what I do and why I’m here. I’m immensely proud of him and grateful to have had the privilege of being his sister.

In all the ways that matter, Peter is your typical 8-year-old. He’s a protective older brother to his younger sister Katie, loves cars, sports and Star Wars. He’s easy to smile, quick to laugh and brings joy to all who meet him. When you’re in Peter’s presence, the fact that he has cerebral palsy and can’t speak, quickly becomes an afterthought.

When virtual appointments were first proposed, we were appreciative but admittedly skeptical about how that would work. But having recently made the shift over to virtual appointments, we’ve been pleasantly surprised by how seamless the transition was. Naturally, there were some growing pains in the beginning, but there were many benefits that emerged over time.

Joe Carr is a socially connected doer and thinker so a worldwide COVID-19 pandemic was not about to stop him from launching his 5th annual Lemonade Stand Fundraiser for Gillette Children's Specialty Healthcare. In fact, Joe and his team say in a strange twist COVID-19 might make this year of fund raising even more successful.

Matthew suffered a traumatic brain injury 15 years ago. After the treatment at Gillette that saved his life, he’s had a singular goal: To live every day, better and stronger. As he says, “It’s not about what I lost, it’s about what I’m getting back.”

"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

Kristin Smith, CO, is the lead orthotist of the OPS spinal orthotics team, and has worked at Gillette for nearly 20 years. When it comes to scoliosis, her relationship with the condition is both professional, as well as deeply personal. Read our conversation with Kristin below.

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.

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.

There are a lot of people who are missing everyday aspects of a normal life right now. There are also countless young adults that are missing out on defining milestones like high school graduation, that before COVID-19, many of us took for granted. We recently spoke with two high school seniors who've been treated at Gillette throughout the course of their lives about how they're doing during this time.

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.”

If you are a child who has a disability or complex medical condition, you may think the thrill of downhill skiing isn’t possible. “Not so!” say patients at Gillette Children's Specialty Healthcare.

"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.

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.

Marlowe Mary Madich is eager to smile, yet surprisingly stingy with her giggles. But her penchant for dancing along to “Shake Your Groove Thing” wins over just about any room pretty rapidly.

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.

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.

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.

It’s funny, you never know at the time when you’re living the day that will change your life forever. But that’s what happened to me four years ago. I work in Community Engagement and Events for the Minnesota Twins and I was volunteering at an event Joe Mauer was hosting for Gillette Children’s Specialty Healthcare, when I saw a little boy sitting by himself on the ground. I sat down next to him and he turned and said: “Hi, my name is Bennett and I love dinosaurs.”I fell in love on the spot.

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.

On April 7th, 2018, I had the incredible opportunity to participate in the Minnesota Miss Amazing pageant. I was lucky enough to learn about this event from a friend who became involved in the past, and had expressed that the event was an awesome experience for her and her family.

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.

Project SEARCH combines classroom instruction and career exploration through hands-on training for students who have disabilities. This is Gillette’s first year participating in the program, through a partnership with the White Bear Lake Area Schools, and the interns have progressed in leaps and bounds.

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.”

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.

Becky Hamilton can’t help but get a bit emotional as she prepares to hang up her scrubs after 40 years as a Gillette Children’s Specialty Healthcare nurse. She’ll freely tell you that when you devote so much of your life to an organization, your colleagues become like family. This goes for your patients as well.

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.

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.

Gillette volunteer and graduate student, Kalpana Parsons, says volunteering is her "opportunity to spread goodness in the world."

"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."

If you want to know how a former guard to the British Royal Family wound up racing his sailboat to help Minnesota children who have disabilities, follow along below.

“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.”

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?

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.

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.

When Willi fell off his longboard, sustaining a life-threatening brain injury, what followed was the night all parents fear. Hear from his mom, Mary, about the recovery she calls "miraculous" and the doctors and nurses she describes as "amazing."

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.

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."