Posts tagged ‘Aware of Angels Photography Project’
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Asia Skye Atwater
Hi. my name is Alicia Atwater and I’m fundraising for my niece Asia Atwater’s funeral expenses. Fundraiser for Season Atwater by Alicia Simons Atwater : Asia Skye Atwater...
RUN’s 2018 Rare Disease Day!
RUN’s 2018 Rare Disease Day events were incredible! Thank you to the Rare Disease Legislative Advocates and the EveryLife Staff for allowing me to share our journey and...
Lashay-Undiagnosed
Lashay: Age 16 Diagnosis: Undiagnosed (POTS, Chronic Illness) USA After being exposed to all sorts of variables(even being bitten by a raccoon) in Costa Rica, Lashay returned home...
Bertrand-N-glycanase deficiency (NGLY1)
Bertrand: 8 years-old Diagnosis: N-glycanase deficiency USA Bertrand was born full-term via natural delivery. His birth weight was a surprising 5 lbs. 12 oz. (an earlier ~36 week...
Debbie, Heather & Logan-Miller Syndrome and…
Debbie Jorde: Multiple Sclerosis (MS) Mother to Heather & Logan Heather Madsen: Miller Syndrome, ADHD, Autism, ciliary dyskinesia (PCD), Hearing Impairment Logan Madsen: Miller Syndrome, ASD, ciliary dyskinesia...
Lucy-Sotos Syndrome (Cerebral Gigantism)
Lucy: Age 5 Diagnosis: Sotos syndrome or Cerebral Gigantism USA When Lucy was born, the doctors kept saying something was wrong but didn’t know what. She wasn’t hitting any milestones....
Ciara-Eosinophilic Fasciitis, Linear Scleroderma, Sjogren’s Syndrome
Ciara Webster: Age 28 Diagnosis: Eosinophilic Fasciitis, Linear Scleroderma, Sjogren’s Syndrome USA, Utah Hi, my name is Ciara. In April of 2006, at the age of 16, I...
Landon-INAD(Infantile Neuroaxonal Dystrophy)
Landon-age 4 Diagnosis-INAD(Infantile Neuroaxonal Dystrophy) Diagnosis Found through whole exome sequencing-INAD (Infantile Neuroaxonal Dystrophy) USA “Landon is 4 years old now! There are no words to express how thankful...
Gabe Valdez’s Rare Disease Day Speech and Harlie Made the Kearns High School Softball Team Today!
I believe we all have a purpose and a destiny to our lives . It may not happen on your timeline. But it will happen as long as you keep...
Jaderee-Eosinophilic Colitis
Jaderee Ann, 17. I have eosinophilic colitis. I live in the United States of America. I have, acid reflux, nausea, occasional vomiting and constant, uncontrollable diarrhea. It started...