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.

Gillette Children’s is leading the way for new treatments, medications, and therapies to help improve the lives of children diagnosed with rare diseases. “Rare diseases are actually common at Gillette and we’re exploring exciting new treatments and therapies to really revolutionize rare disease care,” says Gillette complex care pediatrician, Arthur Beisang, MD.

This past year, 2022, Gillette Children’s accomplished a milestone that few pediatric hospitals in America can match. On October 27th Gillette was proud to mark 125 years of being one of the world’s most respected hospitals treating children with brain, bone, and movement conditions. As we begin 2023, we would like to share some favorite stories highlighting how we innovate, advocate, and celebrate from our 125th year.

Children who have microtia have an ear or ears that are not fully or normally formed at birth. In mild cases, a child’s ear may be partially formed and they may be able to hear. In severe cases of microtia, there can be very little ear tissue and a child may not be able to hear.

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.

Join Juan Diego and his team for Gillette Children's 2022 Walk & Roll community and fundraising event on September 24!

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.

Wondering how to get a second opinion on your child’s recent diagnosis? Here’s how to make a second opinion request, where you can get access to a specialist's opinion quickly.

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.

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.

Gillette Children's is known worldwide for its expertise in caring for children diagnosed with rare diseases. Several Gillette providers are participating in an event at the University of Minnesota to talk about the successes and challenges in caring for rare disease disorders. Linda Krach, MD, is a Gillette rehabilitation medicine physician and a keynote speaker at the U of M event. Krach recently won a prestigious award for her work and is part of a team helping patients who have spina bifida and other rare diseases.

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.

Lucia Lazarus was only 5 years old when she had to have surgery at Gillette. She was devastated to learn she would miss Valentine's Day celebrations at school. But child life specialists at Gillette made sure she felt the love while in their care. Because of the dedication of the Gillette staff, Lucia's family worked to find ways to pay it forward. Now they make Valentine's Day bags for Gillette patients and help amplify the work of our researchers studying the use of Virtual Reality to help Gillette patients manage pain and anxiety.

I have always said that the only thing that I want for Peyton is for her to be able to “create her own story.” I want her to tell us what she is capable of doing and not let anyone believe less of her.

Today we're sharing the story of Chloe and Gracie, two longtime Gillette patients connected by their shared condition of spina bifida, but much more important than that, their profound friendship. 

Learn about skeletal dysplasia, a genetic disorder that causes abnormally shaped bones, especially in the head, spine and bones of the arms and legs.

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.

Gillette Children's is committed to providing access and excellence in health care to children throughout Minnesota. National Rural Health Day is November 18th and an opportunity to celebrate the community-minded spirit of rural American and to highlight health care providers who keep people living in these areas healthy. Although we’re headquartered in St. Paul, Minnesota, Gillette has clinics throughout the state in locations such as Alexandria, Baxter, Bemidji, Duluth, Mankato, St. Cloud and Willmar.

It’s the moment many parents have been anxiously waiting for—COVID-19 vaccines are being rolled out for children ages 5-to-11. Since the start of the pandemic in early 2020, Gillette Children's has been a strong advocate to ensure COVID vaccine access for for children with complex medical needs and their caregivers. A Gillette family shares their relief and gratitude now that vaccines are available for children.

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 the day I met a boy named Bennett.

ZaLayaa Wandrick is 9 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. Since her infancy, Zalayaa has endured a variety of different symptoms that have impacted her daily life, but perhaps the most frustrating thing about all of it has been that the underlying cause of these issues remained a mystery.

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:

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.

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:

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.

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.

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.

“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.”

As loud music filled the adjoining hallways near the Neurosciences unit at Gillette Children’s, 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.

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.

Gillette Children's 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.

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.

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.

“Knowing that Gillette is a PPMD-certified Duchenne Care Center means the world to us because we know for certain Tyler’s getting the specialized care that he needs," says his mom, Marilyn. Meet Tyler and learn about his family's "game plan" to tackle Duchenne muscular dystrophy.

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.

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.

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.

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

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.

“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.”

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.

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.

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.