Posts tagged ‘Aware of Angels’
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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...
Layla-548kb duplication at band 15q26.3
Layla: Age 4 Diagnosis: 548kb duplication at band 15q26.3 USA Defying all Odds!Sweet, beautiful, Layla Anne was born a little baby, soon to defy all odds. She arrived into...
Myiles-Merosin Deficient Congenital Muscular Dystrophy
Myiles-age 4 Diagnosis-Merosin Deficient Congenital Muscular Dystrophy USA Myiles is 4 year’s old, he was born on September 7th 2012 5lbs 13ounces he was beautiful. When he was...
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...
Ethan-Atypical Hemolytic Uremic Syndrome (aHUS)
Ethan: Age12 Diagnosis: Atypical Hemolytic Uremic Syndrome (aHUS) USA “Ethan was clinically diagnosed as having Atypical Hemolytic Uremic Syndrome (aHUS). A genetic, chronic, ultra-rare disease that can progressively damage vital organs, potentially leading...
Utah Rare’s Journey
It was an honor to share my journey with Utah Rare at the Global Genes RARE Patient Advocacy Summit along with Sharon King of Taylor’s Tale and the NC Rare Disease Network. The breakout...
Undiagnosed Day is today! April 29th, 2016 #UndiagnosedDay
What does “Undiagnosed” mean? “An undiagnosed disease is a medical condition without a known cause despite a lot of evaluation.” Undiagnosed Disease Network UDN What is Undiagnosed Day?...
Faith-based movie “Miracles From Heaven” misses opportunity to raise awareness for the majority of rare disease families
Thank you to the filmmakers for making the movie “Miracles From Heaven” with Jennifer Garner. It is the real-life story of Annabel, who suffered from a rare disease....
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...