Gillette Stories

Rare Disease

Leo St. Martin to Lead the Way in Gillette Children’s 2025 Walk & Roll Event

Leo St. Martin is Gillette Children's 2025 Children's Miracle Network Champion and 2025 Walk & Roll patient ambassador. He is all about sports. Baseball, football, hockey, soccer – you name it, he wants to play it. When he was an infant, Leo was diagnosed with Infantile Pompe disease, a rare genetic disease that leads to weakened muscles. His physical and occupational therapists helped get him into a power chair when he was just three, and they continue working with him, motivating him to make the impossible, possible.

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Rare Disease

Gillette’s Global Partnership Advances Care for Rare Disease

Over 400 million people worldwide are estimated to live with a rare disease, and over half of those living with a rare disease are children. Gillette Children's has partnered with the International Hospital Federation (IHF) to form the Global Rare Paediatric Disease Network (GRPDN), a groundbreaking initiative aimed at improving care for children with rare diseases worldwide.

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Rare Disease

What is Pediatric Genetic Counseling at Gillette Children’s

Gillette Children’s is expanding its team of expert genetic counselors to help you find answers and make informed decisions about genetic testing and discover how a rare genetic disease might affect your child. Gillette provides solid information and support.

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Rare Disease

How to Advocate for Your Child Diagnosed with a Rare Disease Advice from Lisa Evert

The former president of the Midwest Rett Foundation, Lisa Evert, shares her reflections on how to advocate for your child diagnosed with a rare disease. Lisa's adult daughter, Jill, was diagnosed with Rett syndrome in 1999.

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Rare Disease

The Gillette Childrens Difference in Rett Syndrome and Rare Disease Care

There’s renewed hope for patients diagnosed with Rett syndrome a year after the FDA approved Daybue (trofinetide) as the first approved treatment to help people diagnosed with the rare neurodevelopmental disorder. Some Gillette patients have been taking the new medication for about a year and have seen improvements. Learn how Gillette providers are leaders in drug trials and new therapies for rare diseases.

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Rare Disease

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.

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Scoliosis

Za’Nii’s Relentless Recovery

Za’Nii is only 10 years old, but she’s already been through more than most individuals would in a lifetime. She's stared down two potentially life-threatening illnesses including severe scoliosis, and beaten them both. Through all of it, Za'Nii has maintained an irrepressibly positive attitude that rubs off on everyone around her. Read her story here.

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Rett Syndrome

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

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Rare Disease

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.

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