Just because it’s rare, doesn’t mean it’s not there.

My name is Emily and I’m 20 years old. Growing up, I was a healthy, happy, active and social kid. Just before my 16th birthday,… Continue reading Just because it’s rare, doesn’t mean it’s not there.

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Siempre puedo volar

Soy Mauel, nací de 36 semanas de gestación. A los dos meses de vida mis papás se dieron cuenta que algo no andaba bien, era… Continue reading Siempre puedo volar

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Lost too soon

My daughter Tessa Marie was taking from her family and my self after a very short illness, it lasted 7 days. She woke up on… Continue reading Lost too soon

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The zebra

Everyone always says being unique is a good thing. Not in the medical world. My doctors are waiting for lesion to show on my brain… Continue reading The zebra

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“A vida é uma dádiva, viva e agradeça por estar vivo!”

Sou Mariana (37 anos), de Conceição do Rio Verde – MG – Brasil. Nasci sem complicações no parto, mas foi observado a falta de pêlos… Continue reading “A vida é uma dádiva, viva e agradeça por estar vivo!”

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Never thought this would be me

About ten years ago I began falling. I never tripped on anything or hurt myself but it was puzzling. I went to many doctors in… Continue reading Never thought this would be me

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Kathryn gets Answers

After years and years wondering if there was a genetic condition that was behind why Kathryn was unique – right before her 16th birthday we… Continue reading Kathryn gets Answers

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Never had a chance

Hello , my name is Nicole. I am a 46 year old women who was diagnosed with AVN at the age of 18. After having… Continue reading Never had a chance

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Irene 9p22

Durante el embarazo no sospechamos que Irene vendría con una enfermedad rara hasta el día de su nacimiento, los médicos nos comentaron que sus rasgos… Continue reading Irene 9p22

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