My son Albert found his tribe in the spring of 2015. He was 5 years old then. Born in 2009, Albert had a rough start… Continue reading ADNP-syndrome – Breaking out of the bubble.
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Behcet’s Disease pronounced “Betjets” or “Besh-hays” is as I know it a persistent inflammatory condition associated with impaired auto immunity and pain. The symptoms persist… Continue reading Behcets Disease
Behcet’s Disease pronounced “Betjets” or “Besh-hays” is as I know it a persistent inflammatory condition associated with impaired auto immunity and pain. The symptoms persist… Continue reading Behcets Disease
Here’s our rare disease story…many of you have heard it, some have not. Danika came into this world like any other. Labor was quick, but… Continue reading Beautifully and Wonderfully Made
As a small child there was always something different about Charlie, he never made friends – was constantly being bullied. I was back and forth… Continue reading Charlie’s story
No one could have prepared me for what was coming around the bend. While 2018 came ringing in with optimism- I was back in school… Continue reading Nicki’s NMO Story
My husband, Mark and I have been together for 34 years! We grew up a mile from each other and met in high school. We… Continue reading Family is everything
My name is Prateek Kumar Shukla. I am a second year medical student at Kent State University – College of Podiatric Medicine. My journey towards… Continue reading When life becomes a pain in the neck
A really common “ice breaker” activity at school or at a camp is saying your name and something interesting or different about yourself. I usually… Continue reading The Girl in the Corner with the Crooked Leg