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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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Can’t Keep Me Down

I was in a car accident my senior year of high school. Someone hit my car while I was at a dead stop. Little did… Continue reading Can’t Keep Me Down

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One in three million- Superficial Siderosis

In January of 2014, our neurosurgeon called with great news. No sign of tumors. Gary could make arrangments to see if an otolaryngologist could discover… Continue reading One in three million- Superficial Siderosis

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on my own

My story. I had Anterior cervical dysectomy fusion C4-C5 with iliac crest bonegraft in November 7, 2013, I was again evicted from my relative house… Continue reading on my own

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Folletto Vincy

Sono Loredana Pensabene e sono la mamma di Vincenzo 19 anni, folletto Vincy, affetto dalla Sindrome Phelan Mcdermid, una rara malattia genetica.  La vita di… Continue reading Folletto Vincy

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