Kids Health Matters
Topic: Disability Advocacy

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.

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.

"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.

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.

In the wake of the outbreak of COVID-19, we’ve heard countless stories about the brave medical professionals who are working on the frontlines of this crisis. Of course, it takes many individuals working in close concert with one another to make a hospital run, and it’s impossible to do any type of medical work that’s safe in an environment that isn’t sterile. In a time where handwashing and keeping things clean is very much top of mind, we thought it’d be good to consult the experts in such matters; the individuals who are keeping Gillette’s patients, families and staff members safe by keeping things clean.

During this time of isolation, everyone is looking for ways to stay in touch with the people and causes they care about. In the weeks ahead, we’ll be exploring new ways to connect with one another while also staying safe. Learn five easy ways you can support Gillette and create community together, from a distance.

Many of us will be spending more time at home during the outbreak of COVID-19 (the disease caused by coronavirus), and for those with young children, you may have to get a bit creative to keep them entertained during this time. To try to help, we sat down with the Child and Family Services Team at Gillette Children’s Specialty Healthcare to get some tips on ways you can practice proper social distancing, stay home and safe without going completely stir-crazy in the coming weeks.

You’ve likely been hearing quite a bit about COVID-19—or coronavirus—in the news lately. Our medical staff at Gillette Children’s Specialty Healthcare wants to help our patients and families better understand COVID-19 and how to stay healthy and prevent the spread of the illness.

For 123 years the doctors, nurses and employees at Gillette have worked every day to provide the very best care for all children. This dedication has led to treatments and outcomes that have influenced cerebral palsy care worldwide. 

“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.

Parents traveling with family members who have a disability or special need are often dealing with extra issues and concerns. During the holidays airports are crowded, security lines long and traffic is snarled. Preparation and knowledge are the keys to decreasing stress and getting rid of your bah humbug.

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.

October is National Bullying Prevention Month. While much has been done to help curb bullying behavior, the statistics show more needs to be done. One study shows 60 percent of children who have disabilities report being bullied regularly.

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.

Back pain is more common in children than one might expect. In fact, by age 15, 30-50 percent of all children have had at least one episode of back pain! At Gillette Children’s Specialty Healthcare, our team of internationally-recognized orthopedic experts work closely with many pediatric patients each year, helping them identify and treat their unexplained back pain.

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.

Being the caregiver for a patient or family member who has special needs can be very demanding. Preventing, as well as managing the effects of stress is something many healthcare providers are focusing on for their patients and for themselves.

The therapeutic recreation specialists at Gillette can help plan family summer activities to make sure children who have mobility or health challenges can have fun in the sun.

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.

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.

Gillette Children's Specialty Healthcare has the largest collection of pediatric orthopedic surgeons in the Midwest and recently welcomed Aaron Huser, DO. Huser specializes in the care of limb deformities and deficiencies and is currently accepting patients.

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.

Gillette Children's Specialty Healthcare appreciates the support retiring Minnesota Twins first baseman, Joe Mauer and his wife, Maddie, have given us. To Gillette the Mauers are more than hometown heroes—they're family.

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.

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.

The majority of Minnesota’s state parks have key park amenities that remain inaccessible or only partially accessible to people who have disabilities. See how Gillette is working to change that by supporting proposed legislation that would fund important updates.

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.

Gillette Children's Specialty Healthcare provides support and resources to help kids achieve their athletic goals. Our therapeutic recreation specialists take pride in helping kids improve their strength and flexibility while having the fun experience of playing sports.

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.”

An anonymous mom opens up about her son, bullying, the many lessons she's learned raising a child who has a disability--and the one lesson she'd like to pass on.

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.

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

"This experience allowed me to advocate for the issues I care about to some of the most important people who can present my ideas on a larger scale," says Katie Allee. Learn about Katie's recent trip to D.C. and why she's passionate about being a voice for all children who have complex conditions.

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.

Pain affects all aspects of life, but for many of us, it’s an abstract concept. But, for a moment, imagine what it would feel like to experience chronic pain for an entire month. Start with that, but now expand it out to a year—or maybe even, every day of your life.

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 patients, families and employees joined together at the Minnesota State Capitol to mark our 120th anniversary. Check out photos of the celebration!

On April 25, Gillette patients, families and staff will gather at the Minnesota State Capitol to kick off the hospital's 120th anniversary. See why advocating for Minnesota children who have complex conditions is important to Gillette.

To celebrate National Cerebral Palsy Awareness Month, Gillette is relaunching an updated version of its ability-themed emoji keyboard called Emojability.

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.

Meet Katie Wilkins, a Gillette physical therapist who is passionate about helping kids who have juvenile arthritis. Learn why she's being honored at the 2017 Walk to Cure Juvenile Arthritis.

Take a recently filmed Facebook LIVE virtual tour of our new valet entrance, check-in desk, guest services, waiting areas and more.

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.

There are few things in life as overwhelming as learning your child has a disability. Accepting this and moving forward is a different process for every parent. We spoke with Gillette neuropsychologist Richard DiPrima, PsyD, and below he offers advice to help families navigate this emotional time.

Krista Horning, a Gillette employee for nine years, hopes she's an inspiration to the patients she helps. That's because she's been a patient at Gillette since childhood. Meet Krista and learn why she loves working at Gillette.

When Alexandra's mom started getting questions from other parents about Alexandra's condition, mother and daughter decided to help shift others' perceptions about disabilities. Learn how.

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.

The Mauer and Friends Kids Classic united sports heroes and supporters of Gillette to improve the lives of kids who have disabilities and complex medical conditions. Minnesota Twins first-baseman Joe Mauer and his wife Maddie hosted the event at the Twins' Target Field.

Javier loves spending his summers in Alaska with his mom. But until recently, his family feared those visits might end. Learn how new technology is helping Javier continue his favorite summertime tradition.

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."

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."

Every parent wants their child to be healthy, but that isn’t always the case. The reality is that as many as one in about 325 parents will have a child who has a complex medical condition such as cerebral palsy, according to the Center for Disease Control and Prevention (CDC). The CDC also says about one in six children will have some type of developmental disability.

March is cerebral palsy month – and March 25 is National CP Awareness Day. Take a moment to get information about the most common motor disorder. Remember that when a child is diagnosed, it doesn’t mean he or she can’t live a happy, fulfilling – and most important – meaningful life.

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.