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NOAM, la joie de Vivre !

Bonjour à tous, Mon nom est Noam, j’ai 9 ans et demi, je vis en France et j’ai une dystrophie musculaire de Duchenne qui a… Continue reading NOAM, la joie de Vivre !

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Guerrero/Warrior

My son my warrior is now 13 years old and was born with a genetic rare disorder. A skin biopsy was performed  when he was… Continue reading Guerrero/Warrior

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Janna’s Fight with PTEN/Cowden Syndrome

Janna has had several health problems throughout life, beginning at birth. Doctors told us that the health issues were not linked together. When she developed… Continue reading Janna’s Fight with PTEN/Cowden Syndrome

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Keveonna Gaither Fight With Gorham’s Stout Disease

You know every time people meet my daughter they always ask me how did I find out my baby was sick. Well here it is.… Continue reading Keveonna Gaither Fight With Gorham’s Stout Disease

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Adalynn’s PKU

A few days after bringing home my beautiful new baby girl, Adalynn, I received a phone call from her pediatrician. I assumed it was some sort… Continue reading Adalynn’s PKU

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Elation to devastation

The photo is of my Daughter Jennifer Dietschmann who was 19 – (10 days from her 20th birthday ). Jeni was well happy clever and… Continue reading Elation to devastation

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Rare autoimmune diseases

This is Rueben Kiernan age 4 from Ireland Rueben has extremely rare autoimmune diseases in his liver, lungs and blood. Giant cell hepatitis, interstitial lung… Continue reading Rare autoimmune diseases

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We’re really quite rare..

Where do I start?I met the most wonderful man in 1995.  I’d known him since I was 11 years old so we were friends before… Continue reading We’re really quite rare..

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Battle with a Brain Tumor / Cushing’s Disease

Battle with a Brain Tumor / Cushing’s Disease. My name is Teri Hudson I am one year post op / in recovery from Endoscopic Trans… Continue reading Battle with a Brain Tumor / Cushing’s Disease

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