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Superman Elliot’s fight against NonKetotic Hyperglycinemia (NKH)

Our son ELLIOT was diagnosed with a very rare metabollic disease NKH Non ketotic Hyperglycinemia (glycine) There are 500 children in the world who have… Continue reading Superman Elliot’s fight against NonKetotic Hyperglycinemia (NKH)

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Life of Liam one day find a Cure

My SOn Liam is 16 was finally dianosed at 14 with CHOPS syndrome. He was the first three in the world dianosed thur Childrens Hospital… Continue reading Life of Liam one day find a Cure

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Always look forward to achieving goals in life.

My name is Andrew. I live in Perth Western Australia I am 25 years old I was born with three Brain Malformations, one is Periventricular… Continue reading Always look forward to achieving goals in life.

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Scared Stiff – The Story of a Hyperekplexia sufferer

I am 34 years old and was born with a rare neurological movement disorder called Hyperekplexia. I suffer with the genetic form, and my father… Continue reading Scared Stiff – The Story of a Hyperekplexia sufferer

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The Third Time’s a Charm (NOT)

I am the unfortunate woman who has not one, not two but three rare diseases: fibromuscular dysplasia (FMD), mitochondrial disease and spontaneous arterial dissections. On… Continue reading The Third Time’s a Charm (NOT)

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Living with Carcinoid Cancer

The doctors diagnosed me with CARCINOID CANCER on April 22, 2016. I was informed that it was stage IV. I am a living testimony of… Continue reading Living with Carcinoid Cancer

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Seri’s Fight

It is hard to know where to begin on Seri’s story. Seri is 16 and instead of school, driving, and friends she is dealing with… Continue reading Seri’s Fight

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autoimmune hepatitis,

I’m always trying to help people understand Chloe’s disease and the hell we been thought and are still going thought!!! Around when Chloe was 2… Continue reading autoimmune hepatitis,

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Itching to meet Aiden – Cholestasis of Pregnancy

It was around 34 weeks when I started having my little itch. At first I didn’t think anything of it, and played it off as… Continue reading Itching to meet Aiden – Cholestasis of Pregnancy

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