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Difference is beautiful

Being different is our normal. My 3 beautiful girls , Olivia 16, Sophie 14 & Evie 9 all have a defective Prmt7 gene. This was… Continue reading Difference is beautiful

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I am a Zebra and then Rare Disease Community is My Herd

My life changed in an instant. 32 years old, mom to 5 kids aged 2-13, business owner, married mom. Our newspaper business had just gotten… Continue reading I am a Zebra and then Rare Disease Community is My Herd

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Teacher with a Robot Leg

I was born missing my tibia in my right leg, so my leg was amputated when I was 16 months old. By the age of… Continue reading Teacher with a Robot Leg

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Elias’ Bladder Exstrophy Journey

My 12 month old son, Elias, was born with a complex birth defect called Bladder Exstrophy (BE). Along with the BE he was also born… Continue reading Elias’ Bladder Exstrophy Journey

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Kicking HD In the butt

I was born 10 weeks early and I was diagnosed with Hirschsprung Disease at 3 days old. I was given a colostomy bag and everything… Continue reading Kicking HD In the butt

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Rising up against Cryo

Sometimes, just sometimes, I find writing helps. But I find it difficult writing about illness. And the thought of subsequently publishing it gives me chills,… Continue reading Rising up against Cryo

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My Story!

Aicardi-Goutiere’s Syndrome 2B By:  Daniel Anastasia      My name is Daniel Anastasia.  I’m 19 years old.  I’m a writer and a senior at Hopatcong High… Continue reading My Story!

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Sin control no puedo vivir, con control no tengo vida.

Edu es mi hijo, tiene 32 años. En su primer año de vida un neurólogo tuvo la sospecha de que podría tener el Síndrome de… Continue reading Sin control no puedo vivir, con control no tengo vida.

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What is normal?

My name is Reece and I am about to turn 3 years old. I was diagnosed with Glycogen Storage Disease when I was 20 months… Continue reading What is normal?

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