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Complicated Rare Disease Warrior

My life has always proven to have some sort of health issue. As a child, no genetic tests were done. We knew I had lots… Continue reading Complicated Rare Disease Warrior

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Es Amaro, no es raro!

Amaro es un niño de 13 años diagnosticado de tetrasomia 9p hace 4 años. Desde que nació tuvo dificultades motrices y de aprendizaje, mucho dolor… Continue reading Es Amaro, no es raro!

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Alvaro’s Journey

My son Álvaro (27) was diagnosed with Gorham Stout disease, a complex lymphatic anomaly (CLA), months after the diagnose of a mediastinal germ tumor. Two… Continue reading Alvaro’s Journey

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Rare and mighty

I am a super happy, silly and loving 6 year old. I was diagnosed with RTS at 2 years old. It took two years which… Continue reading Rare and mighty

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Témoignage sur le syndrome ondines.

Bonjour je m apelle antonin.Je vie depuis ma naissance depuis mes 25 ans avec une maladie respiratoire rare le syndrome ondines.J oublie quand joublie de… Continue reading Témoignage sur le syndrome ondines.

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Mila & Mettl23

At age 3 Mila had severe regression, loss of speech, tremors, and seizures. Six months later she was diagnosed with level 3 nonverbal autism. Little… Continue reading Mila & Mettl23

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living with an invisible condition

To most people, I seem like any other student—someone who excels in school and has it all figured out. But what they don’t see is… Continue reading living with an invisible condition

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Noé, un heros du quotidien

Noé est un petit garçon extraordinaire. Il est né avec une force intérieure qui illumine ceux qui croisent son chemin. À 15 mois, il a… Continue reading Noé, un heros du quotidien

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