Kids Health Matters
Topic: Rare Conditions
Ethan Johnson was diagnosed with a rare condition as an infant. His parents were told he may never walk without assistance. Now seven years old, not only does he walk, he flies out on the ice. Read Ethan's story here.
Feb. 26, 2021
“We’re Kind of Like Sherlock Holmes.” Two Gillette Neurologists Share a Passion for Helping Patients Who Have a Rare Disease
Figuring out if your child has a rare disease is a concerning and challenging puzzle for parents.Two members of the Gillette team, pediatric neurologists Randal Richardson, MD, and Jamie Eskuri, MD, say finding answers and guiding families through a rare disease diagnosis and care plan is one of the most rewarding parts of their jobs.
Feb. 24, 2021
Caring for Rare Diseases and Solving Puzzles: Meet Arthur Beisang, MD
Gillette Children's Specialty Healthcare is known worldwide for its expertise in caring for children diagnosed with rare diseases. Gillette complex care pediatrician, Arthur Beisang, MD is part of the team devoted to providing excellent care and improving the lives of children living with a rare disease.
Feb. 22, 2021
A Conversation with Peter Kim, MD
Peter Kim, MD has worked as a Pediatric Neurosurgeon at Gillette Children's Specialty Healthcare for nearly ten years. Dr. Kim assumed the role of Associate Medical Director for Surgical Services at Gillette in 2021. Kim has been with Gillette since 2011 and has extensive expertise in treating Chiari malformation, epilepsy and seizures, tethered spinal cord, spina bifida, craniosynostosis, and hydrocephalus. Learn more about him, here:
Jan. 10, 2021
My New Year’s Resolution For Now and Always: Being Courageous for My Daughter
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 9 years old, and it’s been a journey of hope, faith and love.
Dec. 28, 2020
Not All Heroes Wear Capes, But Colton Does
For families like Colton’s, the costs of care can be overwhelming. That’s why our donor-funded Gillette Assistance Program exists—to help families worry less about finances so they can focus solely on their child’s care. Not all heroes wear capes, but you can become a hero for kids like Colton when you support Gillette with your donation today.
Nov. 30, 2020
A Conversation with Angela Sinner, DO
Angela Sinner, DO has worked as a Pediatric Rehabilitation Medicine Physician at Gillette Children's Specialty Healthcare for nearly a decade. She is the co-director of Gillette's inpatient rehabilitation unit and Sinner specializes in treating cerebral palsy, muscle spasticity and tone management, as well as traumatic brain and spinal cord injuries. Learn more about her, here:
Nov. 24, 2020
Let’s Chat About Spina Bifida
October is Spina Bifida Awareness Month as well as National Bullying Prevention Month. Most people have experienced some form of bullying during their lives, but unfortunately, many children who have disabilities experience this much more acutely. Earlier this year Gillette patients, Chloe and Gracie sat down to talk about the care they received at Gillette. They also touched on some of the bullying they dealt with at school along the way.
Oct. 30, 2020
The Miracle of Owen
Owen Nei is 11 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.
Oct. 26, 2020
Chloe and Gracie, Connected by Friendship, a Bridge and Spina Bifida
October is Spina Bifida Awareness Month and October 25 is World Spina Bifida and Hydrocephalus Day. To recognize the day and the month, we're sharing the story of Chloe and Gracie, two longtime Gillette patients connected by spina bifida, but much more than that, their profound friendship. Read their story here.
Oct. 25, 2020
Super Sam and Cerebral Palsy
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.
Sep. 16, 2020
Virtual Appointments Break Down Barriers for Families
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.
Jul. 21, 2020
Puppies with Purpose: The Benefits of Animal-Assisted Therapy
“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.”
Feb. 24, 2020
Many the Miles: Deep Brain Stimulation Gives the Gift of a Son
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.
Dec. 2, 2019
Virtual Reality Bolsters Clinical Care at Gillette
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.
Jul. 17, 2019
Robert’s Life with Prader-Willi Syndrome: A Rare Disease Story
For Janet Favorite, navigating her son Robert’s rare condition has been a rollercoaster, steadied by her family’s commitment to providing him with expert care and access to resources at Gillette Children’s Specialty Healthcare. Read her story.
Feb. 27, 2019
What is a Rare Disease? A Closer Look
Rare Disease Day is Feb. 28, 2019. In the United States, a rare disease is defined as a condition that affects fewer than 200,000 people.
Feb. 25, 2019
Lengthening Limbs to Transform Lives: Gillette Welcomes Aaron Huser, DO
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.
Jan. 17, 2019
First of Its Kind in the Metro—Aerodigestive Clinic Provides Coordinated, Convenient Care for Families
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.
Dec. 4, 2018
How a Diagnosis of Rett Syndrome Inspired a Community of Advocacy
When her daughter Amatullah was born, Bisharo Jama knew she would arrive to a loving household stocked with everything she would need, including plenty of hand-me-downs from her siblings. At a few months old, Amatullah seemed just as chubby, beautiful and healthy as her siblings were at her age. But then she started to change in ways Bisharo never anticipated.
Oct. 3, 2018
Bennett’s Story: Forming a Family and Spina Bifida
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.
Aug. 10, 2018
Lincoln is Going to be Lincoln: How I Learned To Stop Worrying About My Son With Special Needs
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.
Apr. 12, 2018
Minnesota at its Best, Sled Hockey for Children who Have Disabilities
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.”
Feb. 22, 2018
Cheering Elliot On: The Bird Family’s Life with a Rare Diagnosis
Elliot and his sister Amelia have a typical sibling relationship; they fight, they argue, they push each other’s buttons. But they have a unique relationship as well, that stems from Elliot's diagnosis with a rare chromosomal abnormality.
Nov. 9, 2017
The Journey of Mateo Arcos: Hope, Love and Cerebral Palsy
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.
Oct. 5, 2017
Rett Designation is Mom’s Dream Come True
Lisa Evert's "ultimate dream" will become reality this weekend, when Rettsyndrome.org officially recognizes Gillette as a Clinical Research Center of Excellence. The honor is a culmination of Evert's passion for helping her daughter, who has Rett syndrome, and a decade of work by Gillette physicians.
Apr. 20, 2017
Infographic: Rett Syndrome Stages and Interventions
View this new infographic to learn more about Rett syndrome symptoms, treatments and statistics.
Apr. 18, 2017
Rett Study Holds Promise for Girls Like Kira
A Phase II study (NNZ-2566) of a drug called Trofinetide has potential to minimize the symptoms of Rett syndrome. Learn more and meet one family who is dedicated to moving Rett syndrome research forward.
Mar. 29, 2017
Limb Lengthening and Perseverance Give Katelyn Momentum
“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.”
Jan. 11, 2017
“My Body was Haunted” – Ali’s Recovery from Chronic Pain
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.
May. 17, 2016
Pregnancy Infection Precautions, Tips to Keep Mothers at Ease
The arrival of the Zika virus in the U.S. has raised awareness of the hidden risk of viruses, particularly those that cause problems for pregnant women and their babies. Zika, however, is only one of several viruses and conditions that can have an adverse outcome on a child in the womb.
Mar. 21, 2016