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An MSUD CF Warrior

I’d like you to meet Johnny! He is 22 months old. When Johnny was just 4 days old his newborn screening tested positive for a… Continue reading An MSUD CF Warrior

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Naël, mon ange bébé parti trop tôt

Heureuse Maman de 3 enfants jusqu’au jour où tout bascule. Mon bébé âgé de 3 mois et demi commençais à avoir des bouton au niveau… Continue reading Naël, mon ange bébé parti trop tôt

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Juvenile myositis

Everyday I would wake up with aching legs, arms, neck, my whole body. From thinking it was growing pains and hoping tomorrow will be the… Continue reading Juvenile myositis

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A Soup of Rare Diseases

I’ve never been a “healthy” person. All my life I struggled with health issues. I grew up in an area of the United States called… Continue reading A Soup of Rare Diseases

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My desmiod fibromatosis story

I was diagnosed on the 14th December just before my 17th birthday last year with desmoid fibromatosis. it took a very long time to find… Continue reading My desmiod fibromatosis story

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I am strong

All my life things have been hard , from having to overcome prematurity to learning disabilities and autism things were always a struggle. Through my… Continue reading I am strong

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Weighing Me Down

When I started 6th grade, I started to fake being sick because I was too tired to go to school. In eighth grade, I was… Continue reading Weighing Me Down

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my mommys journey

After church on April 29th 2012, my mommy’s life changed. After church, we were going up stairs but while we were, my mommy thought she… Continue reading my mommys journey

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Living with Georderma Osteodypladtica

I was born with a genetic disease, there is no cure and it comes with many struggles. The disorder affects my entire body, from my… Continue reading Living with Georderma Osteodypladtica

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