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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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The joys of food

        When our son Logan was first diagnosed with Galactosemia our world fell apart. Having a rare disease was frightening and with… Continue reading The joys of food

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We Beg to Differ

Just what is this ‘TGA’ diagnosis that so few know about? Odds are good that many readers of this article have not heard of this… Continue reading We Beg to Differ

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Jessica’s Journey

Our beautiful daughter Jessica was born on the 13th July 2009 in the weeks prior to her birth we were told she had suffered extensive… Continue reading Jessica’s Journey

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… and in the end I win!

My name is Alessandra Donati I’m Italian and I play golf since 2013. I have a rare illness, the Charcot-Marie Tooth, better known with the… Continue reading … and in the end I win!

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STERKE YELKA

Hallo iedereen, welkom op mijn pagina! Ik ben Yelka, een vrolijk meisje van vier jaar oud die heel graag zingt, danst, kleurt, fietst en puzzelt.… Continue reading STERKE YELKA

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