Kids Health Matters
Tag: advocacy

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

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.

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.

Winter came on with a vengeance this February, and while every child should be able to have fun sledding, it’s more dangerous than many assume. Find out how to stay safe on the slopes this winter.

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.

In the United States, approximately one in twenty-five children is considered “medically complex.” What this means is that these are individuals who have multiple chronic and severe health conditions.

When I work with my patients, something that comes out over time is that I understand the profound stress and anxiety that can come with caring for a child who has complex medical needs. I know this because I’ve devoted my career to working with patients who have disabilities, but also because I’ve lived it.

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.

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.

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.

“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.

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.

Recent natural disasters in the southern U.S. in the form of Hurricanes Harvey and Irma have sparked heightened awareness of why it’s important to have a plan when natural disasters, including blizzards and tornadoes strike your area. Disaster preparedness is even more crucial for families of children who have complex conditions.

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.

"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 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.

“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.”