For the first two years of his life, Rafe Hibben seemed to be progressing like a relatively healthy little boy. But when he was two years old, Rafe’s health went…
Autumn Carolino’s journey began with a stomach ache that just never seemed to go away. Paired with high fevers, the two-year-old’s health seemed to be going on a downward spiral.…
Eight years: that’s how long it has been since Moxie Garrison was diagnosed with Marfan syndrome. Now nine years old, the spunky and resilient third grader approaches every challenge head-on.…
Amber Freed has long been a tireless advocate for the rare disease community. After two years of IVF, she became pregnant with her two children: Maxwell and Riley. About four…
Cyndi Strzynski was always a bubbly, active little girl. Even though she has been facing an immense challenge, she still tries to keep a smile on her face at all…
In 2020, Lily Tyson, aged 12 at the time, was diagnosed with a rare chromosomal disorder called Turner syndrome. More recently, Lily began experiencing various eye issues: redness, pain, blurred…
I have lived with dystonia (a neurological movement disorder) and chronic pain for over 20 years. The very active life prior to dystonia is night and day compared to the forced sedentary…
Together, Sarah Hutchesson-Webb and her fiancé Jake Powell have built a beautiful life together. They welcomed sons Hunter (5) and Aston (2) into the world—and wanted to round out their…
If there’s one way that 11-year-old Cristian Muñoz would describe himself, it would be an athlete. Cristian has always been drawn to playing sports: the rigor, the competition, the connection…
Written by Meghan Bayer Stiff Person Syndrome Spectrum Disorder (SPSD) is an acquired, progressive, neurological spectrum disorder with features of an autoimmune disease that is believed to affect one to…
Vivienne (“Vivi”) Horton has always been a bright and kind, albeit a bit shy and quiet, little girl. So her parents, Valerie and Terry, noticed when she wasn’t acting quite…
Stephanie Felix knew exactly what she wanted for her ninth birthday: to ring the bill at Beverly Knight Olson Children’s Hospital and signify that she was—officially!—cancer-free. When Stephanie was seven…
Jacklyn and Derrick Shaw have supported each other through some of the toughest and most complicated situations that anyone could go through, from a rare disease diagnosis to the loss…
Read Parts 1 and 2 of Katie's story, where we discuss the diagnostic journey, precocious puberty, and Katie's ZMYM2-related disorder diagnosis. Potential ZMYM2 Symptoms and the Need for Research The geneticist mentioned that symptoms…
At first, 52-year-old Lisa Wolff thought that she was dealing with sciatic pain. The pain was sometimes dull, sometimes burning, but generally manageable. When the pain became too much to…
In March of 2021, twenty-eight-year-old Alix Burnard of Newbury, Berkshire UK had several Covid-19 tests due to a suspected infection. All three tests were negative, so she felt it…
Before you continue reading, make sure to check out Part 1 of Katie's story. True Precocious Puberty: The First Official Diagnosis The endocrinologist first ran a blood test, later followed with a…
Imagine being Rowan Marshall, a seven-year-old first-grade student with a debilitating rare disease. Rowan made it through the new student formalities. He is doing well at school. Now he faces…
Before you read on, make sure to read Part 1 and Part 2 of Cristina and Isaiah's story. In Part 1, Cristina discusses Isaiah's GA-1 diagnostic journey and some of her favorite memories of…
After winning the 1998 100m butterfly in Perth, breaking a world record, winning 54 international medals, and becoming the Swimming Hall of Fame inductee in 2022, Michael Klim appeared…
Katie Brown, age 15, loves learning Spanish, swinging, and special effects makeup. In the future, she is considering a possible career as a writer or a special effects artist; she…
When Eric and Samantha Rovinetti learned that they were pregnant with their first child, they were overjoyed. They could not wait to welcome baby Adrianna into the world. But shortly…
In June 2022, Andrew Mace received CPR from a neighbor, 21-year-old Alex Duncan, a med student who luckily remembered her instructions while at Cambridge University, UK. Andrew, age 44,…
Before you read on, make sure to check out Part 1 of Cristina and Isaiah's story. In Part 1, Cristina shared the diagnostic odyssey and fight for answers that led to Isaiah's…
At 33 years old, Cristina Urbina has built a beautiful life. Since she was younger, she always knew that she wanted to work with kids. She loves the laughter, the…
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