Kids Health Matters
Topic: Disability Advocacy

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.

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.

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.

"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 major neurosurgery aimed at reducing Sophia's spasticity.

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.

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 who have disabilities lead more independent lives.

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.”

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.

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.

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.

Cassidy is known as the world's biggest fan of the University of Minnesota women's volleyball team. She attends most games and loves to cheer for the Gophers. 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 now.

“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.

This October marks the 10th anniversary of 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. Parents can learn tips to help intervene when the bullying becomes more intense and persistent.

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 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.

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."

Gillette kids and their families will be able to express their unique experiences like never before thanks to a first-of-its-kind app.

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.

Hear from Gillette's Scott Schwantes, M.D., about what it means to have a rare disease, and why he's so passionate about helping Gillette patients thrive.

A longtime Gillette patient takes a stand against college bullying after using adaptive equipment on campus. She used social media to respond.

This week, the LEGO company unveiled its first-ever figure to have a disability. Hear from Gillette neuropsychologist Richard DiPrima on why the move is cause for celebration.