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.

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.

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

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. 

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.

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.

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.

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.

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.

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.

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.

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.”

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

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.

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.

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.

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.

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.

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

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.

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.

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:

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:

“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.”

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.

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.

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.

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