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gillette STORIES Topic: Rare Conditions

Home / Gillette STORIES / Topic: Rare Conditions
Patient Stories
September 21, 2023

Embracing Community: Meet Gillette Children’s 2023 Walk and Roll Ambassador

ZaLayaa Wandrick is 11 years old. She’s an excellent cook, crafter and loves science, soccer and coding, but for much of her life, has had to deal with multiple sensory and complex medical conditions. This year, she is leading the Gillette community at our Walk & Roll fundraising event.
Rare Conditions
September 18, 2023

Teamwork, Determination Land SMA Patient in College

Ashley Wohl, a 20-year-old woman with Spinal Muscular Atrophy, type 2, worked with Gillette Children's specialists to prepare for her future as a college student at North Dakota University.
Innovation and Research
April 7, 2023

Gillette Welcomes Research Fellow & Partnership to Support Rare Disease Patients of Color  

Rewaa Elgazzar begins nine-month role as Rare Disease Diversity Coalition (RDDC) Research Fellow at Gillette Children's.
Bones
February 21, 2023

Our Journey Navigating a Rare Disease

One mother describes her family's journey navigating a rare disease. While the diagnosis of the genetic disorder was the same for both of her children, the outcomes are very different. 
Innovation and Research
February 20, 2023

Caring for Rare Diseases and Solving Puzzles: Meet Arthur Beisang, MD

Gillette Children's 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.
Rare Conditions
February 10, 2023

Dr. Feyma’s Quest to Answer Big Questions

Gillette pediatric neurologist, Tim Feyma, MD, has always been interested in trying to solve life’s biggest questions. Currently he's working to answer some of the most complex questions in rare disease care. He wants to help the patients in his care live a life as free as possible from pain and excess medical interventions.
Rare Conditions
February 7, 2023

Bringing Back Annika’s Smile

The Hendricksen family travels from Wisconsin to Gillette Children's so Annika can receive care for Spinal Muscular Atrophy (SMA) from pediatric neurologist, Randal Richardson, MD. Richardson is a leader in SMA research and provides treatment and hope to Annika's family.
Pediatrics
October 7, 2022

My Child Needs a Complex Care Appointment. What’s Next?

At Gillette Children’s, we focus on coordinating care for children and young adults who have chronic and complicated medical conditions. We work with your family, your primary care provider and all other specialty providers to create a comprehensive care plan. Our main goal is to support your child and your family.
Movement
August 3, 2022

What Are The Signs of Ehlers-Danlos Syndrome in Children?

What is Ehlers-Danlos Syndrome (EDS)? It refers to a group of disorders that affect the body’s connective tissue. This includes the skin, ligaments, tendons and blood vessel walls. The point of these connective tissues is to provide strength and elasticity to other parts of the body. Children with EDS usually have overly flexible joints. They also can have fragile, stretchy skin.
Pediatrics
July 27, 2022

How We Monitor and Treat Amniotic Band Syndrome

Amniotic Band Syndrome (ABS) occurs when a fetus becomes entangled in fibrous, a string-like strand called amniotic bands.While in the womb as the fetus continues to grow, some of their bands will not grow with them. This causes their blood flow to get blocked and disrupts continued growth and development.
Bones
July 13, 2022

How Physical Therapy Helps Teens With Scheuermann’s Kyphosis

Scheuermann’s disease, also known as Scheuermann’s kyphosis, is a condition where a child’s spine has too much of a curve. This typically happens during periods of accelerated growth or puberty.
Patient Stories
May 10, 2022

Sled Hockey Provides Access 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.”
Rare Conditions
April 20, 2022

How We Treat Circadian Rhythm Disorders in Children

From light therapy and behavioral therapy to medication, our accredited sleep clinic uses a variety of methods to treat circadian rhythm disorders in children.
Rare Conditions
February 28, 2022

Researching Rare Diseases at Gillette Children’s

Gillette Children's is known worldwide for its research and expertise in caring for children diagnosed with rare diseases such as spinal muscular atrophy (SMA), acute flaccid myelitis (AFM), Legg-Calve Perthes disease, Prader-Willi syndrome, Rett syndrome, and other conditions.
Bones
Gillette patient Michael with his mom
February 22, 2022

What is a Rare Disease? A Closer Look

Rare Disease Day is Feb. 28. The main objective of the day is to raise awareness about how rare diseases have an impact on people’s lives and our communities. Gillette Children's is known worldwide for its expertise in caring for children diagnosed with rare diseases such as Rett syndrome, spinal muscular atrophy (SMA), acute flaccid myelitis (AFM), Legg-Calve Perthes disease, Prader-Willi syndrome and other conditions.
Cerebral Palsy
November 30, 2021

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.
Rare Conditions
September 24, 2021

Not All Heroes Wear Capes, But Colton Does 

Colton is 7 years old and this past April, had his 60th surgical procedure. Read Colton's remarkable story of resiliency in the face of adversity, here.
Rare Conditions
May 28, 2021

A Parent/Therapist Partnership Helps Maya Find Her Voice

Communication is important to a good overall quality of life. The team approach to care at Gillette Children's means an occupational therapist, a speech language pathologist and experts in orthotics, prosthetics and seating (OPS) work with families to help children communicate and socialize. When 6-year-old Maya was diagnosed with INAD, a rare, genetic disorder, her parents and a team of Gillette experts helped Maya find her voice.
Pediatrics
May 6, 2021

Gillette Recognized as Rett Syndrome Center for Excellence

Gillette Children’s is one of 15 institutions across the U.S. being honored with International Rett Syndrome Foundation (IRSF)’s Center of Excellence designation or redesignation
Patient Stories
February 26, 2021

Ethan Glides, With a Little Help from His Friends

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.
Innovation and Research
February 24, 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.
Rare Conditions
January 10, 2021

A Conversation with Peter Kim, MD

Peter Kim, MD has worked as a Pediatric Neurosurgeon at Gillette Children's 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:
Cerebral Palsy
November 24, 2020

A Conversation with Angela Sinner, DO

Angela Sinner, DO has worked as a Pediatric Rehabilitation Medicine Physician at Gillette Children's 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:
Innovation and Research
February 24, 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.”
Innovation and Research
July 17, 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, that’s no longer the case.
Brain
Robert Favorite as a young child on a bike
February 27, 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. Read her story here.
Rare Conditions
Amatullah Jama
October 3, 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.
Rare Conditions
Rett syndrome stages and interventions. What is Rett syndrome?
April 18, 2017

Infographic: Rett Syndrome Stages and Interventions

View this new infographic to learn more about Rett syndrome symptoms, treatments and statistics.
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