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One Brave Boy

My name is Oliver and I’m 14 years old. I started my medical journey as soon as I was born. My hollow organs don’t work… Continue reading One Brave Boy

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Gloria

Gloria was diagnosed with a rare and progressive mitochondrial disease called Leigh’s Syndrome when she was 2 years old. She is so positive and happy… Continue reading Gloria

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A doua mea boala rara/My second rare disease

Nu tin minte cand a inceput. Cu siguranta acum cativa ani. Dureri abdominale, cu stari de voma si deranjamente de stomac… semanau foarte bine cu… Continue reading A doua mea boala rara/My second rare disease

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La Principessa Sophie

Sophie è una bellissima principessa, ma una strega invidiosa della sua bellezza volle donarle un gene malato e un gene che non è noto a… Continue reading La Principessa Sophie

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My Journey with HSP SPG7

Hi my name is Kristen Binder. I’m 38 years old. I reside in Oswego, NY. I have struggled all my life with walking and balancing… Continue reading My Journey with HSP SPG7

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You never know

We found out we were expecting you at 25-1/2 weeks; you were born at 34 weeks. We were told you would “fail to thrive “.… Continue reading You never know

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MY NF STORY

Hi, I am Kate, and I am 18 years old. Until I was 6 months, my parents thought that I am healthy pretty girl. But… Continue reading MY NF STORY

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#BatMackStrong

Maverick is 4 years old living with a rare, progressive, degenerative brain disease known as Leukodystrophy. He wears braces on his legs, has a feeding… Continue reading #BatMackStrong

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Behçet e Um dia de cada vez

Apesar de tudo, sou mãe, sou trabalhadora e, vivo um dia de cada vez, sempre com um sorriso no rosto. Fé em Deus, foco nos… Continue reading Behçet e Um dia de cada vez

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