Category Archives: My Blog

Documentary Debut Thanks to Barcroft TV

Hello everyone, Barcroft TV did a short documentary on my life and what it has been like trying to find answers.  Please check out the article and video: Barcroft TV http://www.barcroft.tv/rare-dwarf-saul-wilson-syndrome-louisville-condition-doctors-help I am so honored to share my story with … Continue reading

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Stories From Around The World

When I started writing this blog I wrote my story, because there was nothing else out there but I had hoped one day it would become the outlet that shared not only my story but anyone else’s stories out there … Continue reading

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Finding the Gene For Saul Wilson Syndrome (Medical Articles)

Hello Everyone, below are the medical articles that the doctors wrote about Saul Wilson Syndrome and finding the gene. A Recurrent De Novo Heterozygous COG4 Substitution Leads to Saul Wilson Syndrome, Disrupted Vesicular Trafficking, and Altered Proteoglycan Glycosylation:  https://www.ncbi.nlm.nih.gov/pubmed/30290151 Zebrafish from … Continue reading

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Newsweek Article

Thanks to Newsweek for being the first news outlet to pick up my story! Here is the newsweek article:  https://www.newsweek.com/saul-wilson-syndrome-medical-mystery-rare-form-dwarfism-finally-solved-1152285

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Local News Station Picked Up My Story

Local News Station WDRB ran a story on me attached is the link:  http://www.wdrb.com/story/39322959/woman-with-rare-form-of-dwarfism-helps-doctors-solve-medical-mystery

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Latest Newspaper Articles

Hello Everyone, Ever since the doctors came out with the medical article announcing the gene of my dwarfism.  I have been doing interviews and trying to share my story.  Here are links to a few local newspapers who shared my … Continue reading

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Invitation to the National Institute of Health

On August 9, 2017 my mom came to me with a message that was left on our phone.  She told me she believed it was a doctors office that had called and she took down the number for me to … Continue reading

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The Best News of My Life

Growing up with a rare type of dwarfism there were no answers and I learned at a young age that I may never get answers and I learned to be “ok” with that. I faced a lot of tough challenges … Continue reading

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A Big Day For Saul Wilson Syndrome!

Today I am finally able to announce my big news.  Doctors have found the gene that causes Saul Wilson Syndrome! On August 11, 2017 doctors from Delaware called me to tell me that there had been a break through for … Continue reading

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I’ve always been a dreamer

I say I’ve always been a dreamer because I dream about a life that could be.  When I think about the life that I want or wish I could have, writing always comes to mind.  I’ve always wanted to write … Continue reading

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